HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Aspergers Children Are Picky Eaters

Getting Your Asperger Child to Try New Food: As if coping with Aspergers wasn't difficult enough, meal times can become the battle of the century trying to get your Aspergers child to eat something, anything. Sometimes, due to their sensory issues, getting a child with Aspergers to eat can make you want to pull your hair out. One day they will eat something, and the next day they scream when it comes near their mouth … not to mention your fears as a mother or father that your child is not getting adequate nutrition.

So what do you do when your Aspergers child becomes a picky eater? Here are a few suggestions:

1. Make a game of trying a food. Have him help you prepare a new food, and then both of you taste it. Or make a food a funny color as a joke, and then eat it.

2. Make your Aspergers child a "menu". Have him choose an appetizer and a main course. Provide him with two choices in each category. Make both appetizer choices foods he does not typically eat. Serve him a very small portion of the appetizer he chooses, start with just one bite. Provide a choice of at least one main course food that he prefers, but tell him appetizer comes before the main course and he needs to choose and eat the appetizer before he will be given the main course. Stress to him that as soon as he tastes the appetizer it will be time for the main dish, and provide a lot of positive reinforcement for eating the appetizer. Try to stick with the same appetizer choices for about a week to allow him to get used to them. If he starts picking the same appetizer on consecutive days, begin increasing the serving size until he is eating a typical amount.

3. One option is to try the same food in another form. If they were unimpressed by the orange slices, provide them with a glass of orange juice.

4. One possible issue is the upset over food touching other food. This can be easily remedied by using divided plates that do not allow contact between areas and therefore, the food remains separated.

5. Outside of meals, try talking to him about new things in general, and how trying new things is sometimes scary – but also lots of fun. You could remind him of things he was scared of initially but now enjoys, and then point out that trying new foods is similar.

6. Won't touch green vegetables? Serve them some V8. Of course, this can become difficult and you can feel like you are running a restaurant if you have other children you are preparing meals for, but like all aspects of the Aspergers world, it takes adjustments. The less you indulge in the food fight the better chance you have of overcoming the issue.

Though coping with Aspergers and picky eating can be a somewhat daunting task, it is essential to keep trying and doing your best as a parent to provide your child with what they need. If you notice a complete lack of certain nutrients or foods in their diet, your best approach may be supplements. Do what you can, and in time it becomes easier and more like second nature. It's a long and gradual process, but stick with it.

The Aspergers Comprehensive Handbook

Aspergers in Babies

Self-centered behavior, repetitive behavioral patterns, and difficulty in social interaction – all these symptoms point to Aspergers in your baby.

Aspergers is a part of the family of autism spectrum disorders. Those suffering from the syndrome show difficulties in social interaction, along with repetitive and restricted behavior and interests.

This syndrome differs from other autism disorders by its relative preservation of linguistic and cognitive development. Unlike other autism disorders, it is also very difficult to track and diagnose. The babies suffering from this syndrome might exhibit a few symptoms only and even they might be difficult to identify. Unlike the kids suffering from autism, those with Aspergers might show no delay in language development. They usually have a good control over grammar, but do exhibit a kind of language disorder. There are no delays in cognitive development or in age-appropriate self-help skills, such as feeding and dressing themselves. However, they may have problem with attention span and in organization. Such kids usually have average and, at times, above average intelligence. Read on to explore the causes and symptoms of Aspergers in infants.

Causes—

The causes of Aspergers are not very clear. Researchers are still investigating for the exact reasons behind this syndrome. It is believed that the pattern of behavior that characterizes Aspergers may have many causes. The condition seems to have a hereditary factor or component in it. Studies indicate that Aspergers may be associated with other mental disorders as well, like depression and bipolar disorder. Researchers are also looking for any possibility of environmental factors affecting brain development.

However, what needs to remembered is that Aspergers is not caused by emotional deprivation or deficient upbringing of a person. Some of the behavior may appear deliberate and intentionally rude, but people should not mistake it as the result of bad parenting or upbringing. It is a neurological disorder whose causes are not yet been fully understood. Currently, there is no treatment for the disorder, as the causes are so vague, so a youngster with Aspergers grows up with the same. However, it generally does not affect the normal living of a person.

Symptoms—

• Babies suffering from Aspergers usually stay away from other people. They are more of a shy nature and indulge in minimal interaction with the people around them.
• Kids suffering from Aspergers are often highly self-centered. From their talks and behavior, it seems that nothing matters to them more than their own self.
• Clients may also face problems with regard to non-verbal cognitive abilities, which can be average or below average. The verbal ability remains average or above average.
• Such children even tend to have a robot-like scripted speech or way of conversing. They keep repeating the same things again and again.
• Such children tend to show some kind of an obsession with any complex topic or situation, which does not even require the amount of attention they are giving.
• The babies suffering from Aspergers might also lack in common sense. They may find it difficult to apply their brain in common situations.
• The kids suffering from the syndrome may face some problem with regard to reading and writing. They may also have problem in subjects like math, where reasoning is required.
• The syndrome often projects some odd behaviors and mannerisms. The children may behave in a strange manner to a certain situation, or just generally.

Diagnosis—

This syndrome is very difficult to diagnose as kids suffering with Aspergers functions well in most aspects of life. So, their strange behaviors can easily be attributed to them being different. According to mental health experts, the detection of the syndrome at the earliest is very important. Interventions involving educational and social training perform while a youngster’s brain is still developing is highly recommended. Though the symptoms are not very clear, but if you are able to detect even few of them, it is advisable to recommend your youngster to a doctor. A complete psychosocial evaluation will be done while examining the baby. This will include careful examination of the history of symptoms, the language and motor skill development of the youngster and other aspects of personality and behavior.

Treatment—

• Language Therapy— Kids suffering with Aspergers show some difficulty in speaking and communicating, though they have good control over language. There is a need for them to go through a language therapy to make their expressing ability fluent.

• Medications— There are no medications as such for Aspergers. But some medications as prescribed by a specialist may improve some specific symptoms that might be complicating your baby’s progress.

• Parent’s Education & Training— It is very important for the moms and dads to be completely aware about all the aspects of the disorder. The moms and dads whose youngster is suffering with the disorder should be well aware of the disorder and its affect, so that they can take proper care of their kids, as prescribed by the specialist.

• Psychotherapy— Once a youngster grows up they can also undergo psychotherapy or a cognitive therapy for better results.

• Sensory Integration Training— The sufferers of the syndrome might be highly sensitive to certain things or situations. So, a sensory integrated training can be conducted by a specialist, which will help decentralize the stimuli to which the kids are highly sensitive.

• Social-Skill Training— Kids suffering with Aspergers are self-centered. They don’t mingle well with the society. It is important to give them some social-skill therapy. The moms and dads or the family members can only help them by comforting them and granting confidence in them at social gatherings.

• Specialized Educational Interventions— Kids suffering with Aspergers can also face problems in educational field, so a special educational intervention is a must.

The Aspergers Comprehensive Handbook

Aspergers and Sensitivity to Touch

Question

My eight year old son was diagnosed with aspergers syndrome two years ago. He has major trouble wearing anything but basketball shorts and very soft t-shirts on a daily basis. Is it wrong to force him to wear things that he doesn't like? I forced him to wear jeans and a dress shirt for picture day at school and it was horrible. I don't know if I'm doing the wrong thing by forcing him.

Answer

I wouldn’t say it is wrong  …inconsiderate would be a better term. A common thread discussed by parents with Aspergers children is sensory issues. These children can have either Hyper- or Hypo-sensitivity. Some of them even express the sensory issues from birth. The sensory issues can be specific to one sense or across several senses.

Examples of hypersensitivity:

• Touch: Does not like touch (especially when unexpected). May be sensitive to textures or different fabrics
• Taste: Easily gags due to texture or tastes. A "picky" eater
• Sounds: Showing great discomfort to loud noises such as fireworks, movies, or parades. Or easily distracted by sounds
• Smells: Avoids the meat aisle in the grocery store (too stinky). Detects odors that others may not even notice
• Sight: Bothered by bright lights

Children and Aspergers are anecdotally said to be hypersensitive to touch. They will often report that some – or most – of their clothes are “tickly.” Aspergers kids with touch sensitivity are often in the state of “red alert”. Many of the sensations that we take as meaningless, they view as a physical threat. Kids with touch sensitivity also experience tactile sensations differently than others. Something that we experience as smooth can seem to them painful. The result is that often their behavior is affected.

To give you an idea of how Aspergers kids experience the world, imagine the feeling you have when someone scrapes his nails along a blackboard, or the feeling you have when you cut your nails too short. This is how a touch sensitive youngster might experience a warm caress. There is a difference, however. When you cut your nails too short, it bothers you for a while, but the discomfort goes away. If a child is touch sensitive, the discomfort never goes away.

The Aspergers youngster may not be able to wear his dress pants because the feel of wool is too uncomfortable to bear. He may not be able to concentrate in school because he is enduring the hardness of the chair or the rush of air blowing on him from the ventilation system. He may be quick to lash out when another child bumps him because of the perceived attack by the other child. He may be unable to make friends because of the fear of being bumped prevents him from interacting in a normal fashion.

Here are some of the things that may indicate that your Aspergers youngster is touch-sensitive:

• Craves certain sensations the he finds calming, like rocking or firm pressure
• Fights irrationally when you are combing or shampooing his hair, cutting his fingernails, or brushing his teeth
• Gets distracted because of the things that are touching him are bothering him
• Insists on having certain textures of clothing
• Makes you cut all the tags and labels out of his clothing
• Reacts strongly to sensations that most people don't notice
• Soles of feet, mouth and tongue are usually most sensitive areas
• Tries to avoid tactile experiences
• Won’t eat certain foods because of their texture

Treatment—

Treatment of touch sensitivity is usually done under the direction of an occupational therapist. If you feel that your Aspergers youngster may have touch sensitivity, you should first try to confirm the diagnosis by going to someone who is trained in diagnosing sensory integration problems. You should first consult your doctor with your concern and try to get a referral to a “Pediatric Occupational Therapy Service” for diagnosis and treatment. They will manage your Aspergers child’s treatment plan and teach you what you can do at home to help your child.

What Can Parents Do?

A common approach is to spend the time and money needed to find alternative fabrics and styles of clothing. Tolerance for fabrics will vary from child to child. So take your Aspergers son or daughter with you to the clothing store and have him/her experiment with different clothing items. For each shopping excursion, plan on spending at least two hours. You may have to go to several stores. And if you find only one item that your Aspergers child can tolerate per trip – consider yourself very lucky!

Help for over and under-sensitivity to tactile experiences:

• Cook meals with different size pieces of vegetables and different texture foods.
• Encourage and offer tight squeezes and hugs.
• Encourage gardening and patting down soil and working with sand.
• Provide clothing the child is comfortable in.
• Supply a bag of different textured items such as feathers, leather, silk, tinfoil, sandpaper and sponge and encourage the child to rub them and feel the different surfaces.
• Use tactile-rich decor such as cork, sisal rugs and furry blankets.

Other sensory issues—

Help for over and under-sensitivity to oral experiences:

• Encourage bubble blowing.
• Ensure the child is on a multivitamin to make up for any dietary deficiency.
• Offer chewing gum, lollipops and hard candy.
• Supply simple wind instruments such as recorders and harmonicas.
• Supply straws or cups with built in straws.

Help for children with auditory sensitivity:

• Expose the child to a variety of music and see which is most enjoyed.
• Supply earplugs or earmuffs when at a loud event or sports match.
• Take the child to quiet places on outings such as the library, art galleries, coffee shops and parks.
• Teach the child how to cope with or move away from loud noises such as a passing train or screaming children.

Help for children with olfactory sensitivity:

• Don’t bring home magazines with perfumed pages.
• Give permission for the child to leave the room if an odor is too strong and try and make the same provision at his school.
• Supply a small vial of a perfume the child likes that he can sniff if he needs to.
• Teach a child to breathe through his mouth to minimize unwanted smells.

Help for children with visual sensitivity:

• Build 3D models.
• Do jigsaw puzzles with the child.
• Encourage activities where the child sorts items into shapes and sizes.
• Work on collages.
• Work with an ophthalmologist as different color and strength lenses can help.

It is helpful to get the child assessed professionally and then integrate the occupational therapist’s suggestions into everyday routines.


My Aspergers Child: Preventing Meltdowns in Aspergers Children


Comments


Do any of you have trouble being touched? For me, around my belly, I am incredibly sensitive... It tickles so much it hurts... My girlfriend can barely touch me and it nearly broke us up...?"


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Yes, this is a common trait amongst a lot of AS people.


I have a patch of skin above both hip bones that if touched lightly by another person will actually cause me to convulse.


Many of us have a strange disproportionate pain threshold. I've been run over by a car before (note: not hit by a car, the tyres went over me and I was dragged) and that was fairly painless. I've also had surgery that left me with a big scar across my throat and staples holding me together, I never asked for pain relief and went home the same day - to the horror and amazement of hospital staff.


But if I have a migraine I weep like a kid. The feeling of something brushing across my top lip and even having cold objects against my skin are excruciating to me. It's all screwey and upside down.


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I also experience it. For me it's pretty much my entire body. I find warm water (showers, hot tub, etc) desensitizes me.


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I think I have a good pain tolerance. However, it really hurts when I get my back patted hard, like my mom does to me..Don't like having my back touched at all.Strong back muscles, but the nerves ache..

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I have read that people with AS can become quite agitated over little repetitive sounds in the environment that other people can tune out. The ticking of a clock is one example of this.

I find that for me it's chewing noises. I have yet to meet a single other person who is as bothered by them as I am. Often I can't even eat in the same room as other people for this reason. It also limits what jobs I can hold. Perhaps that's why I am making a career out of call centres - if it's your job to talk, usually there is a rule in place that you can't be eating anything at the same time. But sometimes people will stick gum in their mouths anyway. Others don't seem to even notice, but to me it's as loud as thunder. It's even affected my schooling - inevitably there will be at least one person in every classroom that will be chewing loudly on a daily basis. One class I quit attending; the other I actually failed because I would come home so exhausted from the stress of having to hear that all the time that I didn't have any energy left for homework. Even when I'm on the bus I have to select my seat based on who is chewing - I'll usually sit ahead of them so I don't have to see them, and I'll put my music on so I don't have to hear them.


I am on an anti-depressant called Mirtazapine (generic Remeron) which helps to calm me down a little but it doesn't quite take care of everything. I have been like this for at least 10 years, so the best I can hope for is to be in situations where things are quiet and controlled. 


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Very sensitive skin here, especially in winter. A hot bath using a firm brush usually cures it (kind of drowns out the irritating sensation), otherwise I'd be itching all the time. Nothing organically wrong, if I don't scratch, the skin looks fine. But the slightest touch can set it off.


I was once happy enough in a small circle of friends - we used to throw their arms round each other all the time and I didn't mind - quite the reverse. But that was a long time ago, and these days it's rare, I never initiate it (except with my partner when I remember), and when it's done to me it's too much of a shock, so they've tended to only try it once. I'm not rude about it and don't push them away in any overt way, but they seem to pick up that they've goofed. Nothing to do with sensitive skin though, I think I just need forewarning, and these days there doesn't seem to be any rhyme or reason why people do that with me, so it's usually a complete surprise and I'm not ready.


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I think I have a good pain tolerance. However, it really hurts when I get my back patted hard, like my mom does to me..Don't like having my back touched at all.Strong back muscles, but the nerves ache..
im the same way. my dad got into the habit of patting my back, usually the small of my back, and it really hurt!! i had to finally explain to him that it hurt and i didn't like it. also, rubbing my neck or shoulders... it hurts!! lightly rubbing is fine, but the way my dad does it randomly, i have to be like "owowoowowow" to get him to realize he's hurting me. i remember once, my aunt, who was a masseuse at the time, went to rub my shoulders without any warning, and it hurt so bad, i cried!! she was really surprised and just thought my muscles were really stiff. but, i was only stiff because she had done it without any warning. not that i would have let her do it even with warning!!

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yeah mel, my daughter uses her headphones regulary for this reason too, it really helps.

we have a fountain right in front of the house.. and the water running is very irritating to her. we also have a good supply of ear plugs, which have helped us out in unexpected situations.


So far my daughter as been able to avoid medications.. and I am glad of it, as I think it is hard to come off them once started.


I myself have had to resort to anti-depressants for a short while, and just after a couple of months I found, that when not taking them, I was very shakey dealing with my own emotions. I had been buffered, and already I had forgotten how to deal with them myself.. so the "weaning off" was difficult, even though I was told that they were reasonably mild antidepressants, and I had only taken them for a couple of months.


So I would recommend to anyone to get off them asap, and if you have taken any psychoinfluencing drugs for a while, to wean yourself off them slowly and with great care,- expect to feel shakey until the hormones can organise themselves properly again, and make sure you have support from friends and doctors/professionals for that bumpy time


I have had good sucess with tuina, herbal TCM and western herbal medications.. which seems to work for me.


for my AS daughter, for her it seems to be the most important that she has quiet periods in the garden, sitting by the pond, studying newts and insects.. stroking the cats helps too to desensitize



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im not sensetiv but i have a reaction if somebody touch me i dont exspect it


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I'm extremely ticklish... I also get scared around lighters and hot steam hurts me more than it seems to hurt others.
This might be some strange muscle thing, but the odd time when I wash up and stuff like that my arms ache real bad... and when I write.


I don't think I'm weak as such, but it seems I'm very sensitive and my muscles can't seem to cope very well sometimes. I don't know why.


And when working, I might feel exhausted and my body reacts badly with the heat... just when thinking about it I guess... I don't know what it is. In such circumstances my back might sting a bit too.
I don't know what causes all this... I haven't had to work as such for a while though so I haven't felt any of that for a fair while.


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 My greatest problems regarding hyper-sensitivity have been with smells, especially when it comes to perfumes and chemical smells.

When I was a child my mother, who could not afford a car, would take me everywhere on the bus. The smell of the diesel exhaust would make me absolutely sick and I would require a great deal of time to recuperate from the ride. This made my mother severely irritated with me. To make matters worse, there were many times I became so nauseated by the fumes I threw up when we had reached our destination. One such incident took place in the center of the downtown mall. (The whole thing is quite entertaining in retrospect.)


To this day I cannot stand certain perfumes that women wear. If I cannot get away from the smell, such as when I am at work and trapped in the same room with a particularly fragrant person, a massive migraine inevitably results.


Fluorescent lights have had this affect on me, and, when I was a child, the colors yellow, and brown, especially when combined, made my head hurt.


I could go on and on…however, on a more positive note, it does seem that my hypersensitivity has improved, or lessened, with age. I am not as sensitive as I was as a child. 

 
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This does seem to be a common thing.
I am not all that fond of being touched, anywhere.
Having said that, if someone touches my head, it triggers my "fight or flight" reflex, in a big way.


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I don't mind the (mild fall) early-morning cold most of the time, which is all well. But I'm terrible during the solstices.


Whenever I feel a ball fly past my face, I can feel the air rush by my head. Yet, if a ball actually hits me, I'm fine unless it's a headshot.


It's very odd. I'm very odd.




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I have to wash new clothes before I wear them...something about the chemicals bugs the *CRAP* out of me.


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 I completely identify with the smell and sound issues both. As a child, I would get horrendous headaches when it would rain during the night and in the morning sun, fumes from the tarry steam coming from the streets would make me nauseous. Diesel fumes too.

As for sounds, it isn't a particular sound that irritates me, but *any* sort of background noise becomes so overwhelming that I can't even hear someone talking to me a couple feet away. I have practiced reading lips just to help me make out what they're saying! 


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This is so interresting. We all so similar in our quirks, having not been similar to anyone much, it's funny. My mom spent time being anoid with my foibles. I try and cut my son huge slack because of that. He hates that styrofoam sound, a lot. Slurping or squishy chewing sounds have always irritated the hell out of me. In the Oasis guide I was surprised and amused to read that out of all the posible annoying sounds that aspies percieve, chewing was the number one irritant.
Colors...I get it, but I was drawn to one...I can't explain, it just is my color, always was...it speaks to me or something. Deep red. I see it and I feel complete in some way. 


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I seem to have a high threshold for pain from scrapes abrasions and punctures but a low threshold for burns & scalds.
Some parts are strangely sensitive.
I'd swear my mother was attempting to saw my ears off with that comb... 


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I hate having anything wet on my face, even just a little. It took my fiance a while to understand why I wiped my lips after he kissed me.


I'm severely ticklish. I can't stand the feeling of having wet hair on my hands.


At the same time, when I'm touched just right, I get this intense, druglike feeling of euphoria that I can't put a name to. It reminds me of Soma, a prescription muscle relaxer.


I can also get this feeling from visual stimuli.


I used to have a high pain tolerance. But years of being on SSRI's have upregulated my pain receptors. Now, everything that used to kinda hurt can hurt so bad that it causes anxiety and panic attacks.


I also cannot stand the heat. I'd rather be cold than hot, because it's easier for me to get warm than it is to cool off.


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 Wow...I had no idea this was so common! And yeah I know what you mean about not finding anyone similar to you and then suddenly in this tribe it turns out to be such a common ground. I don't post here too often but this tribe means so much to me...so very much. It's so validating. I think about these discussions often. 

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Do any of you have trouble being touched? For me, around my belly, I am incredibly sensitive... It tickles so much it hurts... My girlfriend can barely touch me and it nearly broke us up...




Interesting, I hate being touched around my fits.


Is there a study on oily-skin types and sensitivity?


My cutaneous sinsitivity considering my skin type is number 3[darker than a nordic ike you) or an an average white but lighter than a mediterranean european], I burn and may tan under UV:


Heat and cold - I prefer cold.
epidermis and dermis: almost no sensibility.


I think, maybe it has something to do with your endocrine system(whatever you say in english, mah english too bad), it may interfer in the blood vessels of your epidermis(the sensitive part of your skin), also consider that your muscular mass and your adipose can change your skin elasticity. I have high triglyceride rates in blood and I follow a diet(brazilian) close to the mediterranean diet -veggies, fruits, blah-. So I sometimes I am bleeding and people say "hey, she is bleeding!!" and I tell them: "where exactly?" . Low sensitivity compared to most of people I know


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 I used to get sick on long car rides because of the gasoline smell (getting refules was the worst). What you said about perfumes really resonates with me. Most perfumes are too strong and too sickly for me. Another major thing is cigarrette smoke. If I smell it, I start to gag and my breathing closes up. Hmm I wonder if that's an allergic responce now that I think abou it. 

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My kid is four and has a huge clothing sensitivity. Her twin brother and older sister also have a mild case of it but nothing in comparision. I am constantly using sensitive lotion and even baby oil in their tub to try and help. I have removed all tags and decals, etc. and even tried undershirts. I have not changed my soaps and use senstive "everything". She sometimes has to change 7 times before leaving the house in the am. I am exhausted. Something that she wore yesterday will not be good tomorrow. I am allowing her to choose as it is worse if I pick the clothes. Underware is another huge problem. Most days she wears shorts or pj's if we are at home. HELP!


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 Scent has always been an issue for me. Less so in recent years. I'm now able to walk down the detergent isle of a grocery store without nearly gagging like I did when I was younger. Perfumes and colognes are still a bit of an issue for me. Even (and perhaps especially) unscented commercial cleaners were a big problem for me as a child. I can remember walking into a bathroom in any school, store or hospital when the cleaning crew had finished within 30 minutes or an hour before me and getting an intense headache from the smell of either bleach or amonia and finding it difficult to breathe. It was like an invisible elephant that only I could see -- nobody else had a problem with it -- I was basically incapacitated by it. 

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I feel your pain. I have a 7 year old boy. In all other areas he is very typical. However, we have been dealing with this clothing issue for years. First it was underwear. Then socks. Shirts with sleeves. Shoes ... oh my gosh! He always has an issue switching from pants (in the winter) to shorts (in the summer). Then, once again when the seasons change. I have found that he likes boxers best for underwear. We still have a problem with socks and shoes. I found socks that he will wear but Costco stopped carrying them and I am unable to find them anywhere else. We are currently playing Baseball (his 3rd season) and the uniform is such an issue. Unfortunately I am not able to accomidate his "clothing" issue because the uniform is standard. I have become so frustrated that I have contumplated not letting him play. He gets into total "freak outs" over his unforms. It then ripples down onto our entire family. I am just so tired of dealing with it. I truely believe that certain clothes bother him, but I am at a loss of how to constantly accomodate him. I looked up tactile disorder and is has so many other issues that I don't believe that he has that. Do you have any ideas that you could share to help ease the tension and "getting dressed time"?


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For all of you who have kids that are very sensitive to clothes, etc. I highly recommend them taking the supplement 5-htp. (sold in health food stores). One 50 mg. capsules daily can be broken open and mixed into a small amount of apple sauce, yogurt or the like. You will notice a diffence in your kid in about a week. Their mood will change as well as the sensitivity; all for the good!!! My 7 yr. old daughter has been taking the 5-htp for 13 months and I can totally tell a difference when she misses a dose.


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I am a therapist, and I work with kids with Autism and Sensory Intergrative Dysfunction ages 3-7. I am starting a clothing line for kids who have extreme sensitivity to clothing textures and cuts, and for parents who want to stop fighting with their kids about clothes, and who want to find clothes appropriate for varied occasions, that their kids will actually want to put on (and keep on!). I have worked with numerous kids who demonstrate challenging behavior as a result of being highly reactive to the touch and feel of their clothing. I have been working with parents, kids, designers, and cotton experts/manufacturers to try and design clothing that will "work" for all kids.


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 hmm... hadn't occurred to me that might be an effect of autism... but recently I've been really put off by our downstairs neighbors... particularly the issue is that all 3 of them smoke -- in their apartment -- constantly... There's probably not a one of them (the youngest 14) who doesn't go through at least a half a pack a day. So walking into their apartment is a challenge for me. When Tiff is down there for 20 minutes or so and comes back up, she reeks and I have a tough time kissing her because she tastes like ash to me. I used to be sensitive to smoke as a kid and thought I had outgrown it, but I guess more likely I just haven't been around it as much. 

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My kid has a terrible time with seams in her clothes. She used to have meltdowns every morning. It was a nightmare. Socks were the worst. She would put them on and tear them off because the seams bothered her. The seams had to line up perfectly on her toes. After so many morning melt downs I finally found smartknitkids socks online. They are seamless and didn't bother my kid. It is so amazing! We are still working on the clothing seam issues, but it seems to be better. Now I'm looking for seamless underwear. Any suggestions?


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 I hate high pitched sounds, such as the screech of sound equipment being adjusted and creaking metal joints that need to be oiled. Police and firetruck sirens are also hard for me to deal with. Fortunately, they don't last very long. The Bank of America ATMs in Arizona high high pitch beeps when I push the buttons to enter my ATM code, and I can't stand them. I repeatedly ask the employees to adjust the sound, but they never do anything. Sigh.

The sound of chewing bothers me when I focus on it. Fortunately, other sounds tend to drown out that noise, so I hardly ever notice it. I also mainly eat alone, most of the time. 

 
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I have had the same problem with my kid since she was 2; she is now 5 and will cry for 1 - 5 hours each morning when she gets dressed. The socks have to have the seam right on her toes with no bumps. The underwear tickles. Her panties are too big..... too little. The seam in the back is crooked. etc. etc. etc. I am about to go crazy. It is such a relief to read that other kids have the same problem..... that I'm not just crazy even though I feel that way. We can not afford to buy any thing new just because something "tickles." I am at the end of my rope. I have tried telling her that it is not the clothes, that it is just in her mind, but she doesn't act that way. It is something very real to her. Something I cannot fix. Even at bed time, the blankets can't have any wrinkles, and the pillow has to be just exactly right (which doesn't happen sometimes!) It is such a relief to read all the other entries; even if it doesn't solve the problem!


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What are your thoughts on the necessity of physical restraint in Asperger kids?

Question

My son was diagnosed with "Mild" Asperger's in May of this year …he turned 5 years old in June. I don't think I even want to know what "Severe" Asperger's looks like. I am not particularly impressed with the psychologist that diagnosed J___. His "Compliance Procedure" calls for physical restraint i.e. the basket hold procedure when there is not an absolute necessity for this procedure. (My personal opinion is there is never an absolute necessity), but the psychologist procedure says to use the basket hold to force compliance for a time out or whatever, if the child doesn't just follow those directions. To me this physical contact with a child that has sensory integration problems and Asperger's seems to only fuel the fire and cause the meltdowns to be prolonged. My observation is that allowing him to melt down on his own and try to protect him and the house while this is happening, we can generally get through an issue in 10 - 15 minutes and he is wanting a hug and telling me he is sorry.

I did in a counseling session with the psychologist finally agree after about an very tense hour that the basket hold may be appropriate if there was an immediate danger to person or property. Which the Dr also compromised his position for my son back to this limitation as well. My follow up to that is that it is still never necessary. I think I can keep a 40 - 50 pound 5 year old from doing too much damage to himself or others without escalating a problem. I am 6'4" and weigh nearly 300 pounds - at this point I can take whatever he's got.

What are your thoughts on the necessity of physical restraint in Asperger kids?

I have much enjoyed your weekly e-mails and online post video's etc. I am going to join Online Parent Support. I so much appreciate what you are doing.

Thanks,

R.

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Answer

Restraining a child in the middle of a meltdown is a lot like hugging someone while they are having an epileptic seizure – it serves no real purpose. If the Aspergers youngster or others are in danger, then restraint is warranted; otherwise, it is nothing more than an odd parenting strategy with no real benefit (it’s a lot like “spanking” …it doesn’t really do any harm, but it doesn’t do much good either). When dealing with meltdowns, think in terms of PREvention. INTERventions are rather useless, because if the meltdown has already started – it’s too late!

While the meltdown is happening, remain calm. Anger and yelling only make a meltdown worse. Make everyone ignore what is happening and move away from the youngster. The Aspergers child does NOT like having these meltdowns anymore than an epileptic enjoys a seizure. Having others witness a meltdown embarrasses and humiliates the youngster.

The child in a meltdown is like a skittish horse, thus trust needs to be achieved. You are the person that your youngster trusts. After everyone else has moved away, have the person that the Aspergers child trusts get down on the floor at the same level as the youngster (a couple of feet away). Then speak to the child in a soft, somewhat slow, monotone voice. Ask him what's wrong, or what happened that made him upset. A normal voice may be too loud, and normal speech patterns may be too quick. Ask in as many ways as you can think of. He will eventually understand what you are asking and answer you. Be sure to leave plenty of time between questions so he doesn’t become even more overwhelmed.

The youngster will eventually move to a sitting position …you also need to move into a sitting position. Gradually move closer to the child and speak to him in your soft, slow, monotone voice. Try to attain eye contact, and once you have it, it's up to you to maintain it. Remember the eye contact is for your benefit, not the youngster’s – he doesn’t need it to communicate with you.

Once the child has started communicating with you, ask him if he would like to move to a safer and more comfortable place. He will usually want to be left alone once he has calmed down. Give him a safe spot in the house - and at school - where he can go to calm down. Make sure it's somewhere that someone can keep an eye on him, but gives him a sense of privacy at the same time. Give the youngster time to calm down. Every once in a while, gently ask the child if he wants to come out of his spot and join you, or rejoin his class.

Once he has come out of his spot, ask him if he would like to talk about what happened so you can fix the problem. If you're able to fix the problem, fix it – but don't make any false promises to fix something you can't. Be honest with your Aspergers child. A broken toy can be fixed, but a broken heart is much harder to heal.

Once he has decided to rejoin others, totally ignore the event; act as if nothing has occurred. If the youngster is at school, the teacher should inform the parent that a meltdown has occurred. Sometimes the effects of a meltdown can last all day, with the child being grumpy or unresponsive. He is usually trying to come up with a solution to the problem himself, and if there were witnesses (especially from his own peer group), he will be embarrassed, humiliated, and ashamed.

Punishment is not an option. If the Aspergers youngster could control these meltdowns, then they would never occur. I liken meltdowns to seizures and treat them accordingly. Punishing the child for a seizure/meltdown will only cause resentment and self-hatred. Remember: As the youngster ages, the meltdowns will occur with less frequency and with less severity.

Your biggest plus is a great deal of patience – use it. If you feel stressed out, you're perfectly normal in that regard!

My Aspergers Child: Preventing Meltdowns in Aspergers Children

Asperger Syndrome in Adulthood

Aspergers, a form of autism with normal ability and normal syntactical speech, is associated with a variety of comorbid psychiatric disorders. The disorder is well known to child psychiatry, and we are beginning to recognize the extent of its impact in adulthood. The article reviews the diagnosis and assessment of Aspergers and its links with a wide range of psychiatric issues, including mental disorder, offending and mental capacity. It also describes the broader, non-psychiatric management of Aspergers itself, which includes social and occupational support and education, before touching on the implications the disorder has for our services.

Aspergers comes not only with its own characteristics, but also with a wide variety of comorbid conditions such as depression, anxiety, obsessive–compulsive disorder, attention-deficit hyperactivity disorder (ADHD) and alcoholism, and relationship difficulties (including family/marital problems) (Tantam, 2003). It may predispose people to commit offences and can affect their mental capacity and level of responsibility as well as their ability to bear witness or to be tried. The syndrome can color psychiatric disorder, affecting both presentation and management, for kids and grown-ups across a wide range of functional ability. Families have taken an active legalistic approach, alleging misdiagnosis and mistreatment and demanding clarity as to the relationship between Aspergers and other diagnostic concepts.

Characteristics of Aspergers in adulthood

• Awkward interaction with peers
• Few/no sustained relationships; relationships that vary from too distant to too intense
• Lack of awareness of social rules; social blunders
• Unusual egocentricity, with little concern for others or awareness of their viewpoint; little empathy or sensitivity; problems in communication
• An awkward or odd posture and body language
• An odd voice, monotonous, perhaps at an unusual volume
• Lack of non-verbal communicative behavior: a wooden, impassive appearance with few gestures; a poorly coordinated gaze that may avoid the other’s eyes or look through them
• Superficially good language but too formal/stilted/pedantic; difficulty in catching any meaning other than the literal
• Talking ‘at’ (rather than ‘to’) others, with little concern about their response
Absorbing and narrow interests
• Obsessively pursued interests
• Unusual routines or rituals; change is often upsetting
• Very circumscribed interests that contribute little to a wider life, e.g. collecting facts and figures of little practical or social value

Seeking to describe the nub of this syndrome, Asperger coined the term ‘autistic psychopathy’ in 1944 to distinguish its innate social distance from that which develops later in schizophrenia; the concept was elaborated by van Kraevelen in 1963, Lorna Wing in 1981 and, most recently, Christopher Gillberg (Gillberg, 1998). There have been different interpretations of the syndrome and it has become included in the group of autistic-spectrum disorders.

This review focuses primarily on clinical issues: more academic aspects have been reviewed by Volkmar et al (2004).

Diagnostic classification—

As in autism, Aspergers shows impaired reciprocal social interaction and restricted, repetitive or stereotyped patterns of behavior, interests and activities. Unlike autism, intellectual ability and syntactical speech are normal. Wing and Gillberg place the emphasis on current presentation of normal IQ and speech, but ICD–10 and DSM–IV require their presence from early life. The latter presentation is unusual but was stipulated in order to define a disorder that would be an alternative to autism (rather than just a variant or subtype). It is debatable whether many of the cases described by Asperger would have met ICD or DSM criteria.

Gillberg and colleagues proposed a set of diagnostic criteria that approximate to Asperger’s original clinical descriptions (Leekam et al, 2000). Various symptoms have been suggested as distinguishing Aspergers from ‘high-functioning autism’ (i.e. autism without generalized learning disability) and the issue is clouded by the variety of definitions in use. When allowance is made for ability, there appears to be little real difference between the two except in terms of severity (Kugler, 1998; Gilchrist et al, 2001; Howlin, 2003) although self-awareness remains to be explored (Tantam, 2003).

Is the label useful?

Autistic-spectrum disorders comprise a group of disorders of varied form and intensity that fall on a dimensional spectrum of severity that shades into ‘neurotypical normality’ (i.e. the absence of an autistic-spectrum disorder). In clear-cut cases (exemplified by Dustin Hoffman’s character in the film Rain Man) people are helped by a categorical approach that gives a shorthand explanation of their difficulties. The validity of categorization is less clear for those whose milder symptoms put them near the ‘normality’ end of the spectrum as well as for those whose florid symptomatology is limited to only some of the key diagnostic areas. Even less clear is the position of people who, appearing to be superficially normal, have some of the subtle but disabling psychological deficits associated with autism, affecting executive function, attention, perception and comprehension. Closer examination often reveals a mix of specific developmental disabilities which, should they include language and social impairment, it is tempting to classify under autistic-spectrum disorder, sweeping in many eccentric and isolated personalities.

This desire to place all socially impaired patients somewhere on the autistic spectrum is offset by efforts to split off syndromes such as pathological demand avoidance (Newson et al, 2003) and semantic pragmatic (Bishop & Norbury, 2002) or multiplex developmental disorders (Towbin et al, 1993). Complicated by synonyms such as right-hemisphere or non-verbal learning disorders (Fitzgerald, 1999), the result is a confusing grouping of specific disabilities on which we impose recognizable constellations of clinical disorder (Willemsen-Swinkels & Buitelaar, 2002).

Where should we set the boundaries of a dimensional disorder? As with the personality disorders, there needs to be a diagnostic threshold: it might be the point at which the behavior causes distress (either to the patient or to those around) or significant problems in social functioning and performance, or at which it requires treatment. But can we fix a threshold in this way? The label of Aspergers may help the bullied schoolboy but be rejected when he becomes a mathematical star enjoying university: a functional distinction of permanent traits from a disorder that depends on the setting as much as the innate characteristics. That the presence of an autistic-spectrum disorder may make it difficult for the individual to acknowledge his disability complicates this concept.

Autism used to be considered a rare disorder with a population prevalence of about 0.04%, of whom 70–80% had a significant learning disability. More recently, the extended spectrum of autistic disorder gives a population prevalence of at least 0.6%, of whom 70–90% is of normal learning ability. So far, the evidence is that this shift can be explained by changing concepts and diagnostic boundaries as well as by the wider recognition of autistic-spectrum disorders rather than by any real substantial increase (Fombonne, 2003).

As the developmental model embraces more of psychiatry, it appears increasingly difficult to make a sharp distinction between autistic spectrum disorder and other entities such as the personality disorders, simple schizophrenia and catatonia; at times the diagnostic label reflects the clinician’s specialty rather than the syndrome.

How does Aspergers change with age?

Like many other developmental disorders, autistic-spectrum disorders improve with age, although the symptoms, such as stereotypies, may resurface with arousal, whether from anxiety, boredom, anger or excitement. However, while the more overt symptoms of autism are usually at their most florid in early childhood, the symptoms of Aspergers may only become obvious with the social and functional demands of adolescence.

Besides an innate link with varied comorbidity, there is the stress of growing up with Aspergers that arises from unrecognized disability, limited achievement and a sense of failure, often revealed by an increasing contrast with more autonomous and successful siblings or peers. In addition, the syndrome distorts relationships with family and peers, who can be infuriated by the person’s self-centered insensitivity, obsessiveness and rigid inflexibility. All this can add secondary disability and result in a degree of dependency that is out of proportion to the person’s intellectual ability (Howlin et al, 2004).

Over a third of people with autistic-spectrum disorders develop epilepsy, the risk being linked to the degree of developmental delay and receptive language deficit. There is no specific study of epilepsy in Aspergers, although the relatively normal ability and language suggest that the risk is lower, possibly 5–10%, and that it is more likely to start later, in adolescence or early adulthood (Tuchman & Rapin, 2002).

The presentation in adulthood—

Aspergers in grown-ups presents with particular, and often subtle, difficulties, especially in communication, social relationships and interests. Not all people are affected as extremely as in the descriptions below. In some it is questionable whether they simply fall within the normal range of variation, particularly male, and whether their behavior represents psychiatric disorder or isolated, specific developmental characteristics.

Communication:

This is often obviously abnormal, ‘conversation’ taking the form of one-sided, circumstantial lectures delivered impassively by a seemingly robotic figure with a mechanical voice. However, less obvious conversational abnormality includes unrecognized, underlying discrepancies between verbal and non-verbal language, and between comprehension and expression. These can lead both the affected individual and those around him to misjudge his abilities, expectations being either too high or too low. Very often, reading works where listening has brought incomprehension. Often, the life of someone with Aspergers can be transformed if as much as possible is presented to him in writing.

Social relationships:

These are one-sided, distant or even absent, rather than really reciprocal. Behind this is an unempathic objectivity that results in difficulties that range from understanding friendship (and how friends differ from acquaintances) through to making sexual relationships and grasping the rules that distinguish, for example, seduction from date rape. The person is not uninterested in relationships but, misunderstanding them, is too intense or too detached.

Interests:

A key feature of Aspergers is repetitive or focused activities. At their most extreme, these result in an eccentric whose life is characterized by its routine, rigid and systematic approach and whose world might narrow down to railway timetables or stamp collecting. Any development of an interest remains circumscribed (for example, restricted simply to collecting more of something rather than gaining wider expertise) and, far from becoming the basis of a social network, is enjoyed in solitude.

Psychiatric diagnosis and assessment—

Diagnosis on its own is of limited value, but it is the gateway to a great deal of information, specialist groups and resources, including financial support. It is often not recognized that a diagnosis is simply a working hypothesis: it is a clinical judgment that has to strike a balance between being too broad and being too narrow; and it is a process that can evolve with time and changing circumstances. It is essential, therefore, that it is categorical and that everyone involved appreciates its purpose, as its cut-off points will depend on whether it is:

• administrative – giving access to services or resources, or being part of legal assessments regarding mental capacity, reliability as a witness, fitness to plead and level of responsibility
• clinical – a best guess to guide further treatment;
• for research – excluding any doubtful cases

However, whatever its purpose, a diagnosis should only be given if it has a useful function.

Assessment follows diagnosis and it should be broad and multidisciplinary (Howlin, 2000), in particular, taking account of:

• cognitive ability – identifying discrepancies between receptive and expressive, verbal and non-verbal communication
• comorbid developmental disabilities, notably ADHD, tics and dyspraxia
• functional ability – acknowledging the extent to which problems in executive function and limited empathy can disable someone who is otherwise very able; strengths should be identified, particularly any special talents that may become foundations in life

Diagnosis and assessment in Aspergers:

Many people with Aspergers misperceive their circumstances. It is therefore essential to obtain a comprehensive picture of them that includes the accounts of others such as moms and dads, friends, educators and employers (Green et al, 2000).

A report of the assessment should be given to the patient in writing, to avoid misunderstandings that might arise with spoken communication.

If Aspergers is suspected, diagnosis needs a clinician familiar with the syndrome as well as with the alternatives. The diagnostic judgment should be based on a developmental history (that takes a lifelong perspective) combined with a present state examination designed to identify the features of autism.

Diagnostic instruments:

Diagnostic instruments help clinicians in the systematic collection of the right information, which they might match against criteria that, although evolving, hold them to a consistent threshold and a broad conceptual construct. Matching may be refined by an algorithm, but in practice, such mechanical simplicity can be misleading, particularly when there is a comorbid overlay.

Furthermore, although a number of diagnostic instruments have been developed to identify autism, the few that have been designed specifically for Aspergers are mostly intended as screening questionnaires. They vary in the extent to which they are structured, ranging from the very specific, self-rating Australian Questionnaire (Attwood, 1999) through to the Aspergers Diagnostic Interview (ASDI), a simple framework that has good inter-rater reliability (Gillberg et al, 2001).

The more formal, structured interviews, such as the Autism Diagnostic Interview – Revised (ADI–R; Lord et al, 1994), were initially developed as research instruments to identify kids with clear-cut autism. Broader instruments have since evolved, such as the Diagnostic Instrument for Social and Communication Disorders (DISCO). The Autism Diagnostic Observation Schedule (ADOS; Lord et al, 2000), a subject interview designed to elicit the signs of autism, has a module for able and fluent adolescents and adults. The International Molecular Genetic Study of Autism Consortium intend to publish their Family History Interview (FHI), a set of schedules that includes matching subject and informant interviews as well as a scale to record observed behavior. Whatever instrument is used, it is essential that it takes account of childhood as well as current symptoms.

Many people will have diagnosed themselves from books and self-rating scales and are seeking formal confirmation. A screening assessment focusing only on current symptoms may be relatively brief, particularly if it complements a psychiatric interview. A more definitive diagnostic interview can require several hours and is not something to undertake without good reason.

Differential diagnosis and comorbidity—

Comorbid pathology is frequent and Aspergers has been linked with a number of particular disorders (Green et al, 2000; Tantam, 2003). This association has sometimes arisen from diagnostic confusion but it also reflects a real predisposition (Box 2 ). After helping people come to terms with the diagnosis and its implications (something probably best done by the non-psychiatric services described below), psychiatric management usually lies in the recognition and management of the comorbid disorders.

Schizophrenia:

Despite Asperger’s early intent, it was only in 1971 that autism was distinguished from schizophrenia, although a number of subsequent reports have suggested that it might yet be identified as a predisposing factor. The similarity of Aspergers to a pre-schizophrenic, schizoid personality disorder as well as to residual schizophrenia, in both clinical presentation and neurobiology, has led to a diagnostic confusion that has not taken account of their differing developmental trajectories. Such suggestions of a return to the concept of the unitary psychosis arise where association has been mistaken for causation – both may have similar underlying anomalies giving rise to similar, but not identical symptomatology.

Mistaking Aspergers for psychosis

• A pragmatic difficulty in appreciating the extent or limitations of someone else’s knowledge of a topic, coupled with a tendency to obsessionality, can result in over-inclusive, irrelevant speech that mimics schizophrenic thought disorder.
• Autistic-spectrum disorders can show improvement with neuroleptics (Campbell et al, 1996).
• High arousal in a developmental disorder can produce an acute and transient psychotic state with hallucinations and thought disorder.
• Impassivity and a lack of awareness of the emotional climate can look like inappropriate or blunted affect.
• Incomplete answers can sound like psychotic symptoms. For example, a bald report, without elaboration or context, of everyday teasing can sound like persecutory delusions.
• Occasionally, a very vivid account of events is held consistently but is plainly false; these perceptions do not seem to trouble the individual or to be associated with any functional change. There is the sense that the individual is living in a ‘video world’, only detectable and comprehensible if the interviewer has also seen the video.
• The catatonic symptoms (e.g. odd mannerisms and postures, freezing or difficulty in initiating movement) that occur in a variety of neurological conditions, including schizophrenia, can also occur in autistic-spectrum disorders (Wing & Shah, 2000).
• The slow and reluctant response of patients asked to perform a task that has no meaning for them resembles the negative symptoms of schizophrenia.
• Thoughts expressed simply and concretely by someone who has difficulty in describing internal symptoms can sound very like hallucinations.

Although it is doubtful that an autistic-spectrum disorder predisposes to schizophrenia (Tantam, 2003; Howlin et al, 2004), it certainly does not protect. If psychosis arises, early treatment is so important to prognosis that it should not be delayed by diagnostic doubts. However, it must be recognized that, once a patient has been established on neuroleptics, it can be difficult to disentangle the two disorders.

Affective disorders:

Affective disorders occur more frequently in Aspergers than in the normal population. The inability to label internal feelings can lead to their expression in confusing and even bizarre ways.

Chronic dysphoria may merge with more clear-cut depression, anxiety with phobic states, and over-arousal with panic. All can respond to serotonergic medication. This raises the issue of how readily and how early medication should be tried, particularly in the light of the reservations about the use of the serotonergics in depression (Nutt, 2003). Although one positive randomized controlled trial is available (McDougle et al, 1995a), most of the evidence of their efficacy in autism comes from open trials and is limited to the longer-established SSRIs. Individual patients resort to 5-hydroxytryptophan or St John’s wort.

Obsessive–compulsive disorder:

A natural reaction to the mess of everyday life is to establish order (although the greater the success in achieving a set, predictable world, the greater the distress when faced with novelty and change). For a person with Aspergers this reaction may become pathological: for example, the commonplace collection of objects can come to dominate his life as well the lives of those around him, and if all sense of proportion is lost an obsession can lead to criminal offending.

Management includes the use of standard techniques to cope with obsessions and routines – diversion, environmental change, pictorial or written preparation for change, and the introduction of alternative rules and routines as well as of limits.

Serotonergic drugs can reduce the obsession, although finding the right drug may take a number of trials and, once found, its effect may be only partial and temporary. Medication does allow the introduction of changes in an individual’s life and of behavior that might reduce the likelihood of recurrence.

Obsessional traits run through much of biological psychiatry as well as being an overlapping familial trait in autistic-spectrum disorders (Hollander et al, 2003). The absence of internal resistance and anxiety in autistic disorders has caused some to question whether this is truly obsessive–compulsive disorder (Baron-Cohen, 1989), particularly because the content of the thoughts and the form of compulsive behavior differ from that of the ‘neurotypical person’ (McDougle et al, 1995b). All the same, as the management is similar, the distinction may be academic.

Other developmental disorders:

Aspergers has been linked with ADHD, tic disorders (including Tourette syndrome) and various specific learning disabilities, notably disorders of executive function and motivation that make it difficult for an individual to develop an occupation.

Alcoholism:

Alcohol is an effective tranquillizer, particularly for someone who finds social groups uncomfortable. Aspergers can add a compulsive quality to social drinking and encourage isolated drinking ungoverned by normal societal conventions. The evidence for alcohol misuse in Aspergers is more anecdotal than quantified by systematic research, but its significance lies in the quality of its psychopathology rather than in any increase in frequency of drinking.

Offending:

A reluctance to link any disorder with criminality, a tolerance for disturbance in anybody with disability and an unwillingness to prosecute where conviction is uncertain, all combine to mask any association between psychiatric disorder and offending. However, there is a case for suspecting the undiagnosed syndrome in a number of forensic presentations as a number of predispositional elements come with Aspergers. Various factors combine to make violent aggression relatively frequent in Aspergers: ‘hitting people’ was a problem in 40% of a large case series (Tantam, 2003).

Forensic presentations

The following criminal behaviors might indicate undiagnosed Aspergers:

• Computer crime
• Inexplicable violence
• Obsessive harassment (stalking)
• Offences arising out of misjudged social relationships

Characteristic features of Aspergers that predispose to criminal offending

• An innate lack of awareness of the outcome that allows people to embark on actions with unforeseen consequences; for example, fire-setting may result in a building’s destruction and assault in death.
• An innate lack of concern for the outcome can result in, for example, an assault that is disproportionately intense and damaging. People often lack insight and deny responsibility, blaming someone else; this may be part of an inability to see their inappropriate behavior as others see it.
• Difficulty in judging the age of others can lead the person into illegal relationships and acts such as sexual advances to somebody under age.
• Impulsivity, sometimes violent, can be a component of comorbid ADHD or of anxiety turning into panic.
• Misinterpreting rules, particularly social ones, people find themselves unwittingly embroiled in offences such as date rape.
• Social naïvety and the misinterpretation of relationships can leave the individual open to exploitation as a stooge. Their limited emotional knowledge can lead to a childish approach to adult situations and relationships, resulting, for example, in the mistaking of social attraction or friendship for love.
• In formal interviews, misjudging relationships and consequences can permit an incautious frankness and the disclosure of private fantasies which, although no more lurid than any adolescent’s, are best not revealed.
• Lacking motivation to change, people may remain stuck in a risky pattern of behavior.
• Overriding obsessions can lead to offences such as stalking or compulsive theft. Admonition can increase anxiety and consequently a ruminative thinking of the unthinkable that increases the likelihood of action.

Many of the characteristics listed in Box 5 affect the individual’s capacity to make valid decisions, thus limiting his level of responsibility. Whether someone is identified as an ‘offender’ (as distinct from someone who has committed an offence) depends on chance factors in their environment such as the effectiveness of their supervision, the recognition of autistic-spectrum disorder and the understanding of those around.

Reliability as a witness:

The report of an event depends on what the observer actually saw, their interpretation of the scene and on their memory. Certain characteristics of Aspergers color individuals’ understanding and recall of a situation. Consequently, in deciding on fitness to act as a witness it is important to assess, first, the individual’s ability to give a reliable account. Here it is essential to get enough specific, concrete, verifiable material such as details of the scene (e.g. the clothing worn and the color and pattern of the wallpaper), as well as of the events preceding and following the episode, to be able to identify any temporal confusion.

 Features of Aspergers that affect an individual’s reliability as a witness

• Difficulty in distinguishing his own actions from those of others, which may extend to a confusion of reality with observed fiction.
• Difficulty with the dimension of time. Although the person may recall the sequence of events correctly, his perception of the relative periods of intervening time may be so inaccurate as to make it unclear as to whether he is recounting something that happened the previous day, week or year.
• Difficulty with the normal structure of official interviews, whether in the police station or the witness box, where the unfamiliar surroundings and circumstances will increase his disabilities.
• The interview can be distorted by the misinterpretation of rules and relationships, with undue compliance complicated by a rigid tendency to adhere to (and believe in) a story once it is in his head.
• The risk of misinterpretation of what he has seen or heard.

Second, the individual’s ability to give a good account and to comprehend and to respond to questions must also be assessed. Allowance must be made for communication problems such as the use of words without understanding their significance, the characteristic, very literal comprehension, and the inability to take in non-verbal components. Here the use of visual aids, particularly written text, can help communication, which may be made even more friendly by the use of a computer.

There is a risk that people with Aspergers may not be recognized as vulnerable adults, particularly if they have a good academic awareness of right from wrong. How they present themselves becomes of particular importance with the removal of the right to silence, as it can affect fitness to plead (Gray et al, 2001).

Broader (non-psychiatric) management—

Structure and support can reduce the stress of everyday life to the point that an individual with Aspergers can function (whether in education, employment or family domesticity), and every patient needs to be seen in this context (Powell, 2002). Education is central as, although innate deficits can improve with time, people with the syndrome have to learn consciously the skills that most acquire intuitively. Examples are the unwritten rules of social life such as how to make social overtures, to complain and to avoid exploitation (Segar, 1997).

Education:

Life in a small primary school, with consistent classmates, the same classroom and the same teacher, can be sufficiently straightforward for kids to cope. It is when they move from this relative stability into the secondary school confusion of different sets and multiple educators that they are tested and their true degree of disability becomes apparent.

Education needs to be unusually broad and explicit as these students develop on a wide variety of fronts. Besides supervision to cope with organizing and completing academic tasks, they will need support to develop self-help skills in everyday areas such as shopping, laundry and cleanliness (where obsessionality may block self-care) and social skills (conversation, dating, coping with authority, asking for help) (Attwood, 2000). All of these have to be taught if people with Aspergers are to develop the sense of a positive identity and competence that comes more naturally to normal, ‘neurotypical’ young people.

Further education gives the opportunity to learn the skills necessary to cope with employment, higher education or simply everyday life. Although sector colleges are becoming better geared to students with special needs, they are limited by their structure, funding and expertise. People who are unusually awkward, sensitive, violent or disturbed may require a place at a specialist college. These provide a compatible peer group, staff with understanding and expertise, and considerable support.

Funding for up to 3 years of specialist further education can be obtained for people between the ages of 16 and 25 years. It is intended for those who want to progress beyond school-leaving but do not have the skills or ability to cope with sector college.

Although social demands may be less than in other forms of education, the lack of structure and supervision defeat many who are otherwise academically able. In England, the Special Education Needs and Disability Act 2001 (SENDA) has established legal rights for disabled students and has outlawed discrimination in education at all ages. Students can declare their disability on application to a university or college.

A number of universities have put in place measures to help students with autistic-spectrum disorders. Such measures may create a more sympathetic setting than any previously experienced and bring the hope that earlier disturbance, the consequence of an uncomfortable environment, will evaporate. However, no matter how specialist the college or attuned the university, it cannot be a substitute for an adolescent psychiatric unit or a therapeutic community if it is to retain an academic climate.

 Measures adopted by universities to help students with autistic-spectrum disorders

• A disability support service that has the skills and status to liaise with departments to help them to adapt to the needs of these students (e.g. by extending work deadlines, or modifying arrangements to enable a student to complete placements, practicals or fieldwork).
• A key worker, usually a postgraduate student or member of staff, to whom a student can go for immediate advice or pastoral support.
• A public education program and specific training, for both staff and students, to make them aware of autistic-spectrum disorders and their difficulties, and of the support service.
• Specialist tuition to develop suitable study skills (e.g. language skills, structuring their work and organizing their approach to studying).
• The use of aids such as handouts and tape recordings of lectures.
• Help with managing allowances, budgeting and everyday skills such as laundry and shopping. Mentorship schemes, possibly through the students’ union, can draw in other students.
• A clear and realistic plan for the student’s exit from college when they have completed their course. There should be reviews in the final year and, if the student is under 25 years old, Connexions (the careers and employment advisory agency designed to help people throughout adolescence and into adulthood) can be contacted.
• A support network for isolated students. Group seminars, tutorial and study groups can all contribute, as can paired or group assignments and recreational activities.
• An introductory program that includes first contacts (e.g. with a tutor), good induction and orientation (e.g. with maps of the campus and lists of important contacts and their roles), positive family contacts when appropriate and, above all, a flexible approach that adapts to different students and their particular needs.
• Safe places on campus where students can withdraw, calm down and refocus when anxiety or anger threaten to get out of control. The involvement of all elements, including the campus police and the students’ union, can allow fragile students to complete their course successfully as well as learn to manage their over-arousal.

Employment:

People with Aspergers often find themselves in a maze guided by disability specialists with limited knowledge of the disorder. Their difficulties start with the skills required for a job interview. Then there is the need to cope with people, the unpredictable and the unexpected that are part of many jobs. Even jobs that seem ideal, for example that capitalize on special interests or a methodical approach can fail should an individual become bogged down in ritual slowness or should his interest take over – an enthusiasm for timetables has to remain subservient to giving others the information. The successful post takes these factors into account and builds in support so that, when things start going wrong, they are quickly detected and rectified. Such help may come from a dedicated individual, the job coach, but eventual success will depend on how far the setting and, in particular, others at work are able to take over.

Several specialist schemes have been developed, most notably Prospects, a program run by the National Autistic Society, which has been very successful in helping people to get and retain jobs, largely at a skilled clerical or technical level. Its experience has been of a workforce characterized by good time-keeping and the ability to get on with work that others might find too repetitive, without being distracted by the temptation to waste time in gossip or to engage in promotion-seeking office politics.

Social care:

Many people will need continued everyday support that may range from a regular visitor through to someone living in the same house. For some, this will be to ensure that they eat, care for themselves and continue to take part in society. For others, it will be to help them to avoid or disentangle themselves from the predicaments that arise from their social naïvety, lack of foresight, or odd appearance and behavior (which can make them the target of kid’s abuse and the neighborhood scapegoat). Some will continue to get this support from moms and dads, others may acquire a partner or friend, and a few will need to employ someone on a formal basis. Many find support irritating and difficult to accept.

Family support:

Aspergers adds an unusual complexity to the family, and similar traits in other members may either compound or buffer matters. Moms and dads, partners and siblings may need formal counseling or group work, particularly if they themselves have communication difficulties, an unusual objectivity or a focused persistence. An Asperger support group can offer substantial help.

Service implications—

People with Aspergers fall into therapeutic limbo, too able for learning disability services and foreign to general psychiatry. A political groundswell, driven by families, is pressing for better psychiatric services that are sufficiently familiar with the disorder for it not to disadvantage patients. Psychiatric resources were insufficient even before autism achieved ‘popularity’. Consequently, it is unrealistic to hope for separate specialist facilities for out-patients, let alone in-patients, except at a regional level. Existing resources will need to become autism-friendly, something that is achieved by staff training as much as by environmental change.

It helps that the label of ‘autism’ attracts substantial funding (more than ‘personality disorder’) and that there are a variety of specialist support services. However, although good specialist care services can provide comfortable community placements for very disturbed people, some psychiatric services have found themselves overstretched by over-ambitious care providers that take on more than they can cope with. Supporting and influencing such services in their development might avoid this problem.

The psychiatrist has to keep pace with the growing awareness of patients and the public, as much to exclude Aspergers as to recognize it and its consequences. The effects of comorbid disorder have to be disentangled from the underlying syndrome, and the diagnosis should be used selectively rather than as a catchall for any unclassifiable personality or disorder. The recognition of developmental disorder in an ever-increasing range of social and interpersonal difficulties carries the risk of retracing earlier psychoanalytic paths that medicalized the human condition.

All psychiatric specialties need to develop sufficient knowledge and skill in dealing with autistic-spectrum disorders to avoid accusations of incompetence. An initial step would be to agree the minimum level of expertise and training.

Summary

1. The characteristics of Aspergers include:

a. specialist expertise
b. a lack of speech
c. a lack of interest in people
d. a lack of friendships
e. a lack of awareness of the feelings of others

2. People with the syndrome frequently have/have had:

a. a psychotic episode
b. ADHD
c. alcoholism
d. anxiety disorder
e. depression

3. A person with Aspergers:

a. has difficulty with the unfamiliar and unstructured
b. has very good recall of events
c. needs psychiatric treatment
d. will probably not develop epilepsy
e. will probably require long-term support

4. Aspergers is:

a. a genetic disorder
b. a mild disorder
c. distinct from autism
d. part of the autistic spectrum of disorder
e. predominantly a disorder of childhood

5. Aspergers:

a. can limit mental capacity to make decisions
b. improves with age
c. occurs in about 2% of the population
d. restricts employment
e. will probably include several specific learning disabilities


The Aspergers Comprehensive Handbook

Aspergers Students: Tips for Teachers

Parents With Asperger Syndrome

Parents with Aspergers exhibit either minor and/or significant problems in their parenting. Problems experienced by moms and dads who meet most or all of the diagnostic criteria for Aspergers are significant and yet little understood in the child welfare community. This is in part because the able autistic parent community is invisibly disabled.

Problems in parenting are linked directly to the core neuro-cognitive clinical features of Aspergers itself, namely weak central coherence, poor cognitive shifting & lack of a theory of mind.

In this way, the problems experienced by these moms and dads may be described as being organic in origin. Elsewhere these problems have been described as occasionally presenting as either organic neglect or organic abuse. [2]

Some of these moms and dads exhibit what I refer to herein as a parenting-disability. [3] That is, they suffer from significant neurological deficits that show up as deficits in their parenting tool kit. These deficits in turn impact on their global parenting capacity.

The question of degree of affectedness vis-a-vis capacity to parent is spectrum dependant. Always in addressing parenting problems with this population parent capacity assessors and custody and access assessors need to ask themselves the primary question:

Where is this parent’s placement along the spectrum?

The presence of neurocognitive features of ASPERGERS may not be as problematic in other spheres of the parent’s life [4] but ASPERGERS cognitive phenomenon impact significantly on parenting capacity in a unique and highly specific manner. The fact that a parent may be relatively high functioning in the work place is not an indicator that parenting is not affected in the manner described herein.

There are many aspects that accrue to the optimal parenting of kids that includes nurturing, care taking, relating, understanding, teaching, short and long term planning and the provision of support to the youngster (emotional, relational and financial) as well as guidance. Parenting then necessarily involves an intense interplay between parent and child cognition and between parent and child emotional reciprocity.

Many moms and dads with Aspergers are eager to parent in their kid’s best interests and clearly work hard to understand their kids. However, they suffer from the affecting neurological problems noted herein.

This fact is illustrated by reports of parents [5] with Aspergers themselves. In her autobiographical text Dr. Holliday Willey states:

"we cannot help but tell people what we think the moment we think it. I never for instance leave my kids to wonder what I am thinking& I routinely vocalize my thought processes, often to their dismay ....things are often skewed in our family, turned so that Mom ends up relying on the kids for their judgment and guidance...&. I look to then as confidants and best friends...and I ask them to help me find my way out of malls & to hold my hand when my anxiety mounts, to tell me if I am saying things that no one wants to hear." (Holliday Willey 1999). [6]

Unfortunately, due to the very nature of the disorder, this population rarely avails itself of parent education seminars or workshops where there is evident need for use of such resources. The result is that even very young kids are routinely parentified by these moms and dads.

This is because as a group, autistic parents lack insight into their own autistic condition and into the impact of it in their role as parent. Those few affected moms and dads who do see that their parenting needs to be shored up often fail to see the overall impact of their parenting problems on their kids as being significant.

If they did, being the committed moms and dads they so often are, they might be more willing to seek out autism-appropriate parent supports & resources.

The need for use of such services is even more essential when one acknowledges that many moms and dads with Aspergers have kids with similar profiles to their own (special needs kids on the autistic spectrum) and who are an enormous challenge to parent. This is true even for those parents who do not share similar spectrum-sitting profiles to Aspergers parents.

A description of one problematic parent profile may be seen in The Ontario Association of Children's Aid Society Journal 2003 referenced below.

There are many neurological aspects of Aspergers that impact on the ability to parent. There are three that I present here as being The Big Three. They are as follows:

1. Poor Cognitive Shifting—

Studies in the area of cognition have noted that those on the autistic spectrum have problems with updating the scope and focus of their attention. (Berger et al 2003). It has been suggested that this particular attentional difference may stem from an innate inability to reorient attention rapidly (also Berger et al., 2003). The latter is itself an attentional deficit of significance when the parent has care and control of young kids.

Moms and dads need to be able to reorient their attention frequently and often need to be able to do so under pressure.

It has also been noted in the research that many individuals on the spectrum share a deficit in the shifting and sifting of attention between sensory schemas as well (see reference 2 below).

This significant feature also plays out in parenting. These deficits tie in with other neurological differences of Aspergers such as sensory hypersensitivity and hyposensitivity. Together they impact directly on the core tasks of parenting.

For example: The appearance of a sudden very strong odor may prevent the parent from noticing what the youngster is (also suddenly) doing.

Further on the matter of sensory issues, these moms and dads frequently attest that they find it difficult to tolerate the normal noise, mess and chaos of childhood and especially the high pressure needs of special needs kids for any length of time.

Moms and dads on the spectrum cope with what are essentially neurological insults by any of a number of means: by leaving the situation, by shutting down, melting down or through withdrawing from the toxic stimuli. This fact leaves kids to fend for themselves. [7]

This problem needs to be addressed by child psychologists so that this may be addressed in custody access assessments, by child welfare social workers and importantly, by these moms and dads themselves so that kids in these families can be better cared for when Aspergers parent thresholds have been exceeded.

Related to problems of attention deficit are features of impairment in the employment of visual attention, and, problems in attending to both auditory and visual information as well as apparent problems in attending to many visual items simultaneously.[8] Where the latter is a cognitive feature one might ask how twins for example, could be managed.

Moms and dads with Aspergers with three or four kids may admit to struggling with information and sensory input at play grounds and fair grounds and parks for example. In this way they are no different from kids with Aspergers (on whom most of the research has been conducted to date, and about whom we remain most comfortable discussing in almost every forum).

During parenting time, spectrum-sitting parents may claim they are over stimulated & overwhelmed neurologically [9] or they may blame others around them for their distress. The former is seen in the Holliday Willey book where the authors own sensory issues and other clinical features of her Aspergers present as central to her parenting.

A question that needs to be asked by involved child experts about an individual parent is:

When this parent is neurologically over whelmed, how well does he or she function with this youngster?

2. Theory of Mind—

The second of The Big Three neurological features that these moms and dads lack is a theory of mind (ToM). ToM is one ability we have to make sense of the world we live in (it is not the only one).

This theory purports that an individual's thoughts, knowledge, beliefs and desires make up his or her own unique theory of mind.

Lack of ToM, or mind blindness is a term of art coined by neurocognitive theorist Simon Baron Cohen. Baron Cohen proposes that a core feature of autism is the inability to know (deduce) what others know and what others do not know.

Those who are mind blind, he suggests, are unable to ascribe mental states to others as communication is taking place (or thereafter I presume). Assumedly this is not an either/or condition, with some individuals being more and others being less mind blind than non-autistic individuals.

The Mind Blind Parent:

Mind blind parents with Aspergers frequently cannot correctly discern the thoughts, wishes, knowledge or intentions of their own youngster. What is more remarkable than this reality however, is the fact that this reality is not yet seen in the custody and access or child welfare case law.

No one has looked closely at what it means to be parented someone who lacks theory of mind. However, those who were parented by autistic moms and dads are intimately familiar with the experience. This is a matter of concern especially as regards kids who are in the sole care of such a parent as at access (during marital separation), or death of the non-autistic parent, or abandonment by the non-autistic parent.

In the ToM paradigm, it is believed that non-autistic people mind read effortlessly during communication and that mind reading, in the sense that autism theorist Baron Cohen and his colleagues mean is an integral part of communication and of our innate capacity to relate to, for example, our kids.

It is evident then that mind blindness or lack of a ToM cannot but play a central role in global parenting capacity.

To look at this issue more closely we need to ask the question:

What is it to be an infant and to be parented by a woman who lacks both central coherence and ToM?

I submit that with the pre-verbal child, ToM is the sina qua non of parenting capacity. It is the core parenting feature relied upon by an adult to effectively parent an infant.

Mothers (and fathers) must and do inherently know the wishes and needs of their infants, for how else can they meet their needs?

For those who posit that this discussion is somehow anti-disability, I note herein that the needs of infants can be well discerned by fully blind parents, provided they have intact ToM. Physically blind non-autistic parents are capable of ostensive-inferential communication and so on. Moreover, as a group, they gladly accept parenting aids when offered.

Clearly moms and dads per se rely greatly on the presence of their own theory of mind in order to parent. Clearly those parents who lack one also lack a core parenting skill.

Taking ToM into consideration, one can see that moms and dads with full blown Aspergers would have enormous problems conceptualizing and understanding the nature of and the context of the thoughts and feelings of those they are parenting.

Having regard to ToM one may pose the question:

Do kids have a need to be (read) understood at a fundamental level by their parents?

I submit they do, and to the degree that a parent lacks this ability and where that parent is the primary attachment figure there will be, as yet unnamed, attachment problems for the youngster.

The most recent child psychology research clearly shows that the major factor leading to a secure attachment is the caregiver's sensitivity and responsively to their youngster's needs and signals. (quote from the paper on Attachment and Child Protection by Dr. Tim Smith, PhD., C. Psych, in Enhancing Your Ability To Represent Your Client. Understanding the Clinical Aspects of the Child Protection Case as published by the Law Society of Upper Canada in 2004 at the Continuing Legal Education Program Conduct of the Child Protection File in February and March 2004).

Moms and dads who lack a theory of mind may claim they have only a little mind blindness. In my view this is like being a little bit pregnant. Being able to only figure out first order intentions but not the second order meta intentions is still going to result in severe parent-child miscommunication. Kids are intuitive and perceptive and will know that there are perceptual gaps at play in their relationships with their ASPERGERS parents. This issue has been addressed in part by the Failure of Relevance Theory (see Happes work). A great deal more research is still needed, especially around parenting, and more so of parenting young kids.

How do kids address it?

Again, no one has studied the impact of ASPERGERS on parent child development, but anecdotal evidence suggests these kids need counseling around some of the Aspergers behaviors they grow up with.

If we look at an example of one pattern of parental ASPERGERS behavior one can see how this impacts: Mind blind parents have difficulty distinguishing whether their youngster's actions are intentional or accidental. This is huge for a youngster over the course of years. Non-autistic parents face this dilemma at times, but not in the manner or degree of the Aspergers parent. This one small piece adds enormous dysfunction to these families.

Determining intentionality per se requires ToM. (Francesca Happe offers a sophisticated discussion of this issue in the Frith text). Lack of a ToM in the example above leads to very evident problems around child discipline, criticism, resentment, blame, and correcting behavior (punishment) with obvious related issues for child mental health.

Discussions with kids of ASPERGERS parents almost uniformly reveal child concerns with being scape goated, with the wrongful attribution of guilt or innocence amongst kids in times of familial dispute.

Some moms and dads with ASPERGERS suffer from poor or extremely poor impulse control and from autistic rage and may react strongly to a miss-perceived child behavior. Clearly this is an issue that needs further exploration by child psychologists and social workers.

Face blindness or Agnosia a neurological inability to recognize and read faces. Individuals with a variety of neurological conditions suffer from Agnosia, including moms and dads with Aspergers.

Agnosia is a problem that adds to the overall problem of reading ones kids for these moms and dads. In this context it may be seen as a subset of mind blindness. Digby Tantam's work addresses some of the problems that those on the spectrum experience with their inability to read facial expressions. Face blindness in addition to mind blindness handicaps the parent attempting to reach and relate to their youngster. If the youngster also suffers from face blindness it is easy to see how safety concerns might arise (all inadvertent).

As much as the autistic community argues that autism is a difference as opposed to a disorder, one cannot help but wonder how the youngster of a mother with Aspergers is being helped by this difference in terms of all that we have learned about evolution from Charles Darwin & all that we have learned about the psyche from Dr. Sigmund Freud. Surely it is problematic for a youngster when its primary attachment figure cannot discern the nature of its emotional state either through mind reading or looking at its facial expression.

I suggest that misreading one's child's facial expressions could prove very dangerous for that youngster. (Is he drowning or playing? Is she choking or coughing?).

I submit that mind blindness in a mother is the very opposite of what we know to be mothers instinct (Elizabeth Tinburgen, married to Nobel Prize winner Niko Tinburgen has interestingly done important work in both the areas of Mother's Instinct and autism), namely the uncanny ability that many mothers have to know and sense the state of their youngster's condition (whatever it may be) even if the youngster is in denial, unaware or pre-verbal. Parents rely on reading their youngster's face to understand and respond to signs in the youngster of alarm, distress, fatigue, nausea and signs of sadness, loneliness, joy, and fear.

If we take the example of childhood illnesses, long before clinical signs show up, non-autistic mothers can tell that something is amiss with their youngster. Pediatric literature now advises pediatricians to listen to the parents of their patient’s sixth sense or intuition. I suggest what is taking place is heightened mind reading in the sense that Baron Cohen means is. Pediatrically Mothers instinct then is a noted added & valuable clinical sign.[1] It is a parenting feature that supports child well being. Its absence I argue has the opposite effect. This is an important child welfare issue additionally because autistic offspring have high pain thresholds and have been known not to self report even very serious illness and so signs and signals MUST be seen by the moms and dads of these kids. On this, pediatricians may need to become aware that the parent who brings the youngster to see him or her may not in fact be fully able to correctly describe that youngster's condition or illness or its severity.

When it comes to kids, moms and dads are normally very highly tuned & read very well to signals of all kinds that their kids give to them. Unless of course they are signal blind, mind blind, or face blind.

Aspergers moms and dads are, to borrow Daniel Goleman's term, mis-atuned (dyssemic). There is a nice little discussion of this issue in his book Emotional Intelligence Why it May Matter More than I.Q. This is not a judgment, it just is. Once we better understand the how's and whys of this the better we will be able to intervene to help parent and youngster out.

Kids need a parent who can read them. This speaks to issues of security and safety. It also speaks to how kids learn what intimacy means in their family of origin. Lessons about security, attachment and intimacy are key cornerstone emotional sign posts of childhood.

3. Weak Central Coherence—

Central coherence is the ability we have to focus on both details as well as wholes of a given situation and to follow through on plans in a variety of areas. It is also the ability we have to focus on what takes priority and what is important.

Many parents with Aspergers hyper focus in on details rather than wholes, and have odd focusing of attention something that has been noted in the literature as 'weak central coherence'.

This has obvious consequences on performance of the short and long term core tasks of parenting. This feature of ASPERGERS Parenting is seen in the Holliday Willey book where she describes her own parenting problems that are caused by her weak central coherence.

It also shares child safety consequences. Odd focus of attention can prove lethal (in a car, at the sea side, at the cliffs edge). Non-autistic parents with partners with ASPERGERS all seem to have anecdotal stories that illustrate the significant safety issues with weak central coherence).

Any one of the above three neurocognitive features alone would impact on parenting capacity. But together they are significant and may place kids at risk.

Being able to see the whole picture or the big picture is part of what moms and dads need to be able to do in order to teach a variety of childhood learning tasks over the course of childhood as well as to be a reliable stable presence.

OTHER NEUROLOGICAL ISSUES AFFECTING PARENTING—

1. Anxiety is another problem. Author and Asperger 's Syndrome parent Liane Holiday Willey's book Pretending to Be Normal Living with Aspergers[10] offers a snap shot of a diagnosed mothers problems with the core and other instrumental tasks of parenting. Dr. Holliday Willey's own anxiety is a feature of her Aspergers that takes center stage in her compelling book.

2. Emotional disorders are a problem. Kids are forced to accommodate parental rage, some of which is directed at them and which (see theory of mind above) has nothing at all to do with the youngster.

3. Executive function deficits cause problems especially where there is a separation or divorce and the parent with Aspergers finds him or herself in the position of having to exercise these kinds of skills for his or her youngster alone. Kids in these settings are exposed to an endless series of things lost, things forgotten, appointments missed, late pick-ups, and late drop-offs and so on. In some cases these kids are also caught in the middle as the non autistic parent struggles to keep some kind of order to the youngster's life in the face of disability (which itself masquerades as conflict).[11]

4. When autistic obsessive behavior and or preservations are added to the problems posed above, moms and dads with Aspergers will find it overtly difficult to put their youngster's needs first.

Children Raised by Aspergers Parents—

Reports received by people raised by parents with Aspergers are somewhat disturbing. Many children of Aspergers parents report that they developed severe self-esteem problems because their mother or father could not give them the warmth, empathy and caring they needed growing up. These same people reported bouts with severe depression from what they perceived as rejection from their Aspergers parent on an emotional level. The child’s physical needs were well taken care of, but they had no emotional support. For people raised by parents with Aspergers, the lack of emotional support seemed to have hurt them very much.

Because of the symptoms, it might seem from a child’s perspective that their Aspergers parent does not love them. That is not the case at all. The Aspergers parent loves their child very much. It is the lack of social and communicative skills from the disorder that just makes it look that way to the child. In these cases it would seem very important for the children raised by parents with Aspergers to have support from a specialist.

Your partner may have Aspergers if he or she has most of the following traits:

1. Becomes withdrawn and seems to be uninterested in others, appearing aloof
2. Has an intense and all-consuming special interest or hobby
3. Has difficulty interpreting body language and facial expressions
4. Has difficulty understanding jokes, metaphor and sarcasm because he takes everything in a very literal way
5. Has poor social awareness and finds it hard to imagine how his behavior impacts on other people
6. Has sensory difficulties …oversensitive to touch or smell or noise or to a particular taste …has a very limited diet)
7. Loves routines and gets very upset if these are broken
8. Struggles to maintain friendships

Characteristics of an Aspergers Parent—

• Perfectionism
• Regimentation
• Anger
• Abuse

Child’s Perception—

• Criticism not compliments
• Desire to leave home
• Disagreements between parents
• Egocentric priorities
• Embarrassment in public
• Favoritism
• Fear of the ‘cold’ touch of affection
• Fear of the parent’s mood and not to antagonize
• Feeling a nuisance
• Intolerance of noise and friendships
• Lack of affection, understanding and support
• Parent has a monologue on their own problems

Child’s Reaction—

• Escape using imagination, solitude, alternative family
• Hatred
• Seeking affection and approval

Issues—

• Explaining the person to other family members
• Recognizing the disorder in a parent
• Resolving past issues

Conclusion—

Recent research has raised awareness of adult Aspergers. We now have a more sophisticated understanding of the various neuropsychological and cognitive features of this condition.

This awareness has not yet been addressed in the context of its existence as a parenting-disability, which I have suggested herein it is. Aspergers, whether in a youngster or a parent or both, is an important child welfare issue. While the issue seems to make us very uncomfortable, we owe it to kids to take it seriously.

Moms and dads with Aspergers require a great deal of support with their parenting. To date there is no autism-specific parenting capacity test that can be used to look at these parents in order to find ways to better support them in their role as parent.


The Aspergers Comprehensive Handbook


Footnotes—


[1] Nicole Hackett and Lynn Henderson Asperger's Syndrome in Child Contact Cases Fam Law, Feb. 2002, Dr. Venetia Young Encounters With Asperger's Syndrome in the Solicitors Office in Fam Law September 2001, Jennings Linehan and Schloss Parents with Neurological Disorder Are their Children At-Risk? Sept 2003 OACAS Journal, Jennings Linehan and Schloss Who's Minding the Children? Child Contact and The Parent with Neurological Disorder, International Family Law 2003, District Judge John Mitchell The Unusual Parent and Child Contact Fam Law 2003.


[2] The Parent with Neurological Disorder. Are Their Children At-Risk? Ontario Association of Children's Aid Societies Journal September 2003


[3] I call it this for several reasons. Importantly, it is not a disability that simply affects parenting. The broader implications of these three neuro-cognitive features on parenting is beyond the scope of this commentary but are more fully explored on the ASpar website.


[4] There are parents on the spectrum practicing medicine, conducting symphonies, practicing law and working as actuaries. These are the very same parents whose children are especially invisible as needing parenting interventions and supports.


[5] The question of whether or not AS parents are aware of their own problems or not is contentious. I have written examples from mothers with AS noting where they need their parenting to be shored up, and in one case desperately asking for help, but I have seen none from fathers.


[6] Dr. Holliday Willey hold a doctorate in education and describes what she herself refers to as her parenting problems in a chapter of her autobiographical book Pretending to Be Normal Living with Asperger's Syndrome.


[7] Custody & Access Assessor and Child Welfare Mediator Jan Schloss, (my co-author on this issue in 2 journals) has noted that the children of AS parents face the issue of FENDING on their own as part of their global childhood experience. Jan Schloss MSW came up with this term as it applies to children in these settings. Having to Fend in this way has been described by she and I as being Organic Neglect elsewhere. There is no intention to neglect.


[8] Functional Anatomy of Impaired Selective Attention and Compensatory Processing in Autism Matthew Belmonte and Deborah Yurgelun-Todd Cognitive Brain Research 17(3) Oct 2003

[9] No one suggests they should not take their kids to the circus. What is suggested is that interventions be put in to place to support this activity so that it may have a positive outcome. AS parent meltdown at the end of the fair is not a positive outcome for a child or a parent.


[10] Jessica Kingsley 1997


[11] S Jennings Linehan High Conflict and Asperger's Syndrome mediate.com Dec 2003




References—


Adler Robert E. Time Sharing Guidelines from Sharing the Children: How to Resolve Custody Problems and Get on With Your Life 1988 Adler & Adler Publishers


Journal of Clinical and Experimental Neuropsychology
2003, Vol.25, No.4, pp. 502-511


Central Coherence and Cognitive Shifting in Relation to Social Improvement in High-Functioning Young Adults with Autism


Hans J.C. Berger 1, 3 , Francisca H.T.M. Aerts 2 , Karel P.M. van Spaendonck 1 , Alexander R. Cools 1 and Jan-Pieter Teunisse 1, 2


1 University of Nijmegen, Nijmegen, The Netherlands


Bogdashina, O. (2003). Sensory Perceptual Issues in Autism and Asperger Syndrome:


Ball, Sunni M.A., DAPA Children With Special Needs in Divorce published in Parenting Possibilities Dec 2002 Fourth Judicial District Colorado Springs, Colorado.


Mitchell Baris and Carla Garrity Children of Divorce: A Developmental Approach to Residence and Visitation 1988 Psytech.


Baron Cohen, S Mind Blindness An Essay on Autism and Theory of Mind, MIT Press/Bradford Books 1995


Frith, Uta Autism and Asperger's Syndrome Cambridge University Press 1991


Goleman, Daniel Emotional Intelligence


Hamilton, Lynn. M Facing Autism: Giving Parents Reasons for Hope and Guidelines for Help Water Brook Press, 2000


Heller, S. Too Loud, Too Bright, Too Fast, Too Tight. What to do if you are Sensory Defensive in an Overstimulating World. Harper Collins, 2002.


Jennings Linehan, S. Parenting Mediation in the Family with Disability Resolve Magazine, Family Mediation Canada, Winter 2003 and


Jennings Linehan, S. Special Needs Practice Issues for Ontario Mediators Solutions, Ontario Association of Family Mediation, Spring 2003


Jennings Linehan, S & Schloss, J. Who's Minding the Children? Child Contact and the Parent with Neurological Impairment. International Family Law, Nov. 2003 Issue No 4.


Jennings Linehan, S & Schloss, J The Parent with Neurological Disorder: Are Their Children At-Risk? Ontario Association of Children's Aid Societies Journal, Sept. 2003.


Jennings Linehan. S. High Conflict and Asperger's Syndrome Mediate.Com U.S.A. (in press). Also published as Disability Masquerading as Conflict in Newsletter of the Colorado Council of Mediators Feb 2004.


Comments—


I have not been formally diagnosed as I don't particularly like doctors but I meet almost all the criteria for Aspergers Syndrome. My neice was diagnosed autistic two years ago and during my research I heard about Aspergers and all of a sudden it just clicked. I have had trouble my whole life with all of the issues of Aspergers. Are there any other parents with Aspergers or parents of kids with aspergers?


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My child, age 3, is being *tentatively* diagnosed AS. Being that he is very young(most kids are not diagnosed until school-age) it is difficult to say whether the suspicions will pan out. Have you thought about having an evaluation done?
If you have any direct questions, feel free to pm me.


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I'm currently checking Aspergers out as well. My DS has Sensory Integration and he clicks with the Aspergers theme as well. I'll know more when we can get him in for more evals. But there are some of us in your boat it sounds like and hopefully more will chime in as I as well will be lookign to this board for more info. :-) Goodluck!


ETA 4 years later sicne this was bumped:
He is officially DX'd as Autism.
As far as parent's with Aspergers... lots of those around here too. I'm most likely Aspergers although we don't know which for sure. I chose not to go further into the eval process to pinpoint which one because it really didn't matter to me at the time which it was. *shrug*


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I'm a self-diagnosed Aspie. My official dx, years ago, was ADHD, but in comparing the 2, while there are a lot of similarites, the Aspergers symptoms fit me better. Sometimes it's fun.....it doesn't take much to amuse me, give me some kind of toy with a texture to it, and I'm busy for awhile. Somtimes it sucks......the clumsiness and social problems drive me nuts. Dh also has most of the symptoms. Which is probably why we get along so well, we understand each other. Not surprisingly, our youngest son, the only one that is genetically related to both of us, is autistic. It can make for entertaining conversations with his therapists. "What do you mean there is something "wrong" with smelling every object he picks up? Seems normal to me!" LOL

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I was dx'd when I was almost 40. Now 41. I, too, have a kid with Autism.


I was dx'd as "hyperactive" as a kid and put on Ritalin. clumsy - oh my, YES!
Social problems out the kazoo! I don't remember faces after about 2 weeks. I have freinds who will come up and talk to me and I have absolutley no idea who they are until their voice registers.


I didn't smell things as a kid but licked everything. Sticks, stones, cars... my mom kept gingin violet for me because of constant trench mouth! Lineing cars - ain't that normal? is to me.


flourescent lights drive me crazy. The dishwasher turns me into a monster! The sound causes me not to think and I really become strange. On edge, jumpy.

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Stacie, I hate the dishwasher too. Why does it have to be so LOUD? (and really, it's not, it doesn't bother anyone else in the house). The smelling is not something that stopped.......I still do it! I love candle stores, and bath product stores. Nobody looks at you funny if you are sniffing everything, because everyone else is too! LOL


Isn't it strange, you find all these things perfectly normal........then someone tells you they are NOT. But you've been doing them your whole life, so now what?

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Oh candle stores are awesome. I smell there and use a fingernail to scrape the wax on the candles I like the smell off. (gotta get my licks in!) ick, I know. I just can't help myself.


I don't know abuot the dishwasher and what to do with it. You are right, it bothers no one else.


do you have truoble with lighter colored walls? And the light bouncing off them? As a kid, I used to watch walls because of the colors the sunlight and lights in general make on them. I still find myself doing that.


I have a personal question... I hope you don't mind my asking. Do you S.I.B? If so, what? And do know why?


The sensitivies or lack of in my arms and legs has always caused me to brush with a hairbrush. Hard - untill I would "burn" them. I like the feel of the burn and of the scab healing. I don't even realize I'm doing it most of the time... don't leave a stray hairbrush around me! Other times I know I am and can't help it. It is like my ankle comes alive. Hard to describe.


oh well. I know other aspies who do the same sort of thing. Just curious.

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LOL! I've never tried licking candle wax, but it doesn't sound that odd to me. Kind of interesting, really. I'm not trying it though, the last thing I need is another stim. LOL


I'm sorry, but I'm not familiar with the abbreviation S.I.B. If you want to fill me in, I'll probably answer. I'm finding it so cool to find another mom like me to talk to, I'm willing to share.

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S.I.B. - self injurious behaviour.


headbanging, scratching, etc.


Did you you love to swing as a kid? I still do. Go to the park with the huge swings. And swing so hard.


have you ever tried some of the now common therapies? Like vitamins and suppliments, etc.

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Oh, ok, SIB. I'm familiar with the term, my brain just wasn't translating the abbreviation for some reason. I went through a phase of it as a teen, but I rarely, if ever, do it any more. I'm sorry, but that's probably the only phase of my life that I really do not feel comfortable sharing all the details about, so that's all I have to say right now. I did a LOT of crazy stuff, I learned from it, I've moved on. Currently, the closest I come is the compulsion I have to pick at any clogged pores, or little scabs I have. I know it's gross, but it's somehow satisfying.


Swinging, ohhhhhhhh I love it. My child has one of those big therapy net swings, right in the living room. One of my goals is to lose enough weight to use it myself, it looks SO fun! (it has a weight limit about 20lbs below where I am right now)

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I can understand that. I try not to consciously sib. I stop when I catch myself. And, yes, the teen years were worse for me. About 15-19 was terrible.


Those therapy swings are great! So are the therapy balls to bounce on. I like bouncing too! At age 9 I could bounce on a pogo-stick over 2,000 times without stopping. People used to count me bounce on the street! lol.


What type, if any, fabric or clothing bother you? Synthetics burn. I only wear cottons. Most other fabric really irrates me or smells bad. I can smell oil in some fabrics.


Do you have trouble with the textures of some foods? I have a very hard time with the pulp in fresh fruits. I can't eat it. But, I can drink juice with no pulp or eat fruit that has been cooked.


I wrote something on a board several years on tactile defensiveness, that a freind put on her web site. I'll copy to here if anyone is interested. ? It is about different tactile problems and how I have learned to adapt to the problems.


It is great chatting with other people who are going thru the same thing. It's nice not to be alone.

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I would love, love, love more info on tactile defensiveness. Aidan's not so bad about it, but Nick also has SID, which my mother (his legal guardian) has chosen not to do anything about, since it's on the mild side. He could probably use some at-home work though.


There are no particular fabrics that I don't like, but I do have to feel everything before I buy it. It just depends on each garment whether or not it's going to irritate me.


Food textures---the one that's coming to mind now is rice. If it has a really good flavor to it, I'll manage to eat it anyway, but plain white or brown rice? No way! Aidan is the same way with yogurt-- he doesn't like the texture, but if it's got a flavor he likes (particularly banana or cherry) he'll go for it. It's funny to watch him. He takes a bite, makes a horrible face, then begs for more. OTOH, I absolutely love the texture of pears, but I'm not that fond of the flavor. But I'll eat them, just for that slightly gritty texture! I know there are other foods I've sworn off because of the texture, but I can't think of any more examples right now.

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Sensory Experiences -- A personal story


I'm going to begin this with talking about "frustrations" and the physical bombardment which can manifest them. I know that you know about different senstivities, but I'm going to try and explain how this sensitivies effect the body and the mind.


Let pretend you are in a kitchen. You probably have a window, lighter colored walls and floors and a white fridge. All these lightly colored things reflect light. They create a beautiful array of colors as they "dance" off of your walls. Since most kids with autism have dialated pupils, which means they gather more light than what is considered "normal". Frustrations #1 "Don't you see the prism of colors and aren't you blinded?"


Now, you may have a dishwasher, microwave and a fridge. Did you know that standing beside a fridge is like being really close to a freight train? Microwaves are worse. And dishwashers sound like your in a war zone! Frustration #2: "Why doesn't all that noise bother you, it hurts me?"


Tactile: Did you know synthetic fibrac burns the skin? Did you relize that seems feel like razors? Frustration #3: "Get these closthes of me, I'm on fire!"


Internal: Can you hear the blood whooshing thru your head? Do your ears always ring? Can you feel your heart beat? Does everything you eat feel like a brick? Does milk make you feel drunk or goofy? Does your stomach itch and burn? Can you hear gunshots in your head? Do your arms and legs feel like jello?


Sometimes, you can block all of this out. By "stimming". I dislike that term. It is NOT a stimulatory activity but a very, very, very calming one on nerves that are totally frazled all of the time. "Please let me swing, or rock back and forth, flap my arms". "I can 'feel' my arms then." Please let me spin plates and car tires" Please let me line up my cars. There is no sensible order out there. I can't control anything. Please give me this". "Join me in this. I can see that I don't belong. Make me feel as if I do."


I really do not beleive "SIB's" are that at all. We don't want to hurt ourselves. "BUT DAMMIT-MY BODY HURTS". "CAN'T YOU MAKE THE LIGHTS NOT FLASH". "I'M TOTALLY CONFUSED BY ALL THE SWIRLS OF COLOR!" "WHY ARE YOU TELLING ME NO WHEN I HIT MY HEAD ON THE WALL, THE F...ING PAIN MOVES". You think you have a "temper tantrum". With the screaming and yelling , but you don't. You have a plea in the only way I can tell you. Please put me somewhere quiet, and somewhat dark!" "I CAN'T TAKE ANY MORE OF THIS CRAP! WHY DOESN'T THIS BOTHER YOU?" I wanna tell you what's going on with me, but somewhere between my brain and mouth it gets lost in the noise and color. "DAMMIT, I HATE THIS!"


Picture this bombardment constantly on your body and in it. It never stops, even at night when sleep is susposed to bring a peace to the body. What is peace?


Coping... This a hard one. This is a continual coping process. At 38, I reckon I have found a few ways. As, a teenager, once the initial surge of puberty hormones was over, I discovered that I had a bit more freedom to eat what I could handle. By this I mean no one would force me to eat fruit, fruit pulp gags me. I also learned that milk set in my stomach as a ton of bricks. So, I didn't eat those.


I learned as an adult to scatter brightly colored rugs around a light room. It really helps in obsorbing some of the brightness and reflections from the lighter walls and such.


I have discovered that my stomach/intestines feels better if I take a small amount of Vitamin A dialy. Along with my vitamins. I also have a lot less bowell trouble.


I have a great Psychiatrist who I have been going to since 1985! Sometimes I go more than at other times. He has helped me to learn about emotions other than happy/sad/angry sort of thing.


I also take St. Johns Wort herbal blend with Kava Kava, Gotu Kola, Ginsing, Ginger, Kelp. This helps me to remain more relaxed. If things get really bad, I keep a supply of Inderal (beta blocker) for heart palpitations and panic attacks. Which I do have on a regular basis.


I am also hypo-glycemic. And crave sugar to keep my blood sugars up. But, I do have a yeast problem with frequent yeast infections. Did you know that yeast infections burn in your entire gut? And make you silly?


As for the "SIB's" I still feel the need to sometimes just bang my head...but I don't. So I do allow myself to put on steel toed shoes and go outside and kick a tree. Other times I just jump up down or swing...


With my child if he stimms. That's ok. If he head bangs. That is ok too. I look at it as something the body needs to do. I just provide a way in which he will not injure himself. For example - if he does head bang I put a large over stuffed pillow between him and floor. He head will get the sensations of jarring but it won't get bruised. Sometimes, he used to poke his fingers into his eyes. I would give him a hand towell and show him how to put an even pressure on the eyes. Beleive this or not, it callms the eyes. I will also put him in a darker area.


He does from time to time throw raging fits. OK. these are fine too. I pick him and put him in his room. I turn of light. Put on some low "relaxation" cd's. He likes the ocean sounding one. I close his windows and curtains. He usually will not allow me comfort him. So, I allow him time to begin calming down. Once they begin to callm down from the bombardments they are more able to handle intervention by comforting, holding etc.


I hope some of this helps.


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I have an 8 yr old diagnosed with Aspergers. I am what Tony Atwood refers to as "adult recovered" aspie (I believe that i the term he uses- something like that, anyway). As a kid, I could have been diagnosed with Aspergers, but now I don't think I even could be diagnosed- even though some of the issues are still hanging about to a certain degree. One reason to consider diagnosis is services. You may be eligible for things like SSDI income or Medi-care coverage with a diagnosis.


My 9-year-old DS has Aspergers. My DH has it too (although never formally diagnosed). My FIL does as well, we are sure of it. I am about as neurotypical as you can get. I find the "issues" of my DH and son so hard to deal with sometimes, but I try to be compassionate and kind. Our marriage has been really, really tough. We're doing much better now but almost broke up 5 yrs ago). I've found that I need to do my own thing socially or I can't stand it. Namely, if DH wants to be a hermit and not leave the house, then I go places myself.


I can't use my dishwasher - they both can't stand it. DH needs to buy his own clothes because he only wants certain fabrics and brands. Neither of them can stand tags in their clothes - DH would rather destroy a garment removing a tag than wear it with the tag. I can't play my violin or viola when they're home either. My DS is so very clumsy, he can't even catch a ball or dribble a basketball.


If any of you have suggestions to help me, as a non-Aspie, deal with issues in a kind and constructive way, I'd love to hear it. It seems as if the Aspies in my house are wired to be so self-absorbed, and I give and give until there is nothing left of me. Hope that makes sense?

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Well, Aspies *are* sort of wired to be self absorbed. They don't naturally think about how things affect someone else, and it can be difficult for them to do that. Understanding that may help you, but it's not an excuse for them to just do what they want. They also need to learn to think about the others in their environment. Have you ever had a family meeting? Maybe a weekly family meeting would be a good way to deal with some of the ongoing issues? I think you need to talk about these issues that involve more than one person, and to come up with compromises that everyone can live with. If the dishwasher bothers them, maybe you can run it at night as you're going to bed? Maybe DH can take the kids to the park an afternoon a week so that you can play your music, etc.

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Well, yes, Aspies ARE wired to be self-absorbed.


Something to consider-- your dh and ds probably have a hard time reading your facial expressions and body language. I know that's a tough area for me. So you are thinking "well, they should know that I'm angry/sad/frustrated, just by the way I look and act!" But they very well might NOT! You need to tell them "I'm feeling X and I need you to do Y to help me" People with Aspergers are even LESS "mind readers" than neurotypical people. Even if they know what you are feeling, it may not occur to them what it is that YOU need to feel better. They may try what would work best for them........which may very well mean leaving you alone, which probably isn't what you want.


I think Khrisday has a great idea about the family meetings. Get it out in the open, spell out what your issues are, and brainstorm on what you all can do to resolve these issues. And it goes both ways. Get them communicating on what their issues are, and how you can resolve them.


And by all means, get out into social situations alone if you have to. I'm a lot more social than my husband, even though we are both Aspies. I don’t' necessarily know the right way to handle a social situation, but dangit, I want to get out there and try! So I do. And it's handy, really, if you think about it. You don't have to worry about getting a sitter, because your hubby is perfectly happy to sit at home and be a hermit with the kids!


And on some level, you've just got to accept that they are different. Pick your battles. Yes, the dishes MUST be cleaned. So offer a choice-- they can wash the dishes by hand, or they can go outside, or to the store, or as far away from the dishwasher as possible while you run it. But is it REALLY a big deal if they have to take the tags out of their clothes?

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I don't beat around the bush when talking to the guys in this house - I just say it directly. It's been hard making that transition. I am going to try a family meeting, but doubt my DH will meaningfully participate.


Of course, I have to accept that they are different. I know that. But you know what, this might sound heartless, but where is any acceptance for me and my needs? My child goes to his social skills group and to his counselor every single week - that involves dragging my 2 year old along, and DH won't leave the house to take him EVER - he just wants to be alone and do what HE wants to do. My DH not only did not mention Mother's Day yesterday, my family went out to dinner and he stayed home to change the oil in his truck.


I was just using the tags issue to illustrate the bigger picture - they have so many issues with textures from food to clothes, to everything, it is so hard to keep them happy and I'm getting weary of it. We don't have the money to buy the Aspies in this house every single thing their heart desires either. My DH and son have special interests in computers, and DH will buy stuff before I pay the bills and leave me short of money.

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My 6 yo DS was just recently academically diagnosed with AS (in July there will have testing done which will probably result in a medical diagnosis of AS).


Right now I'm going through the grieving process --- that I don't have a typical son. And I worry that my 10 month old DS has autism. I'm thinking about the road ahead.


If anyone has any recommended resources to share (books, websites), I'd greatly appreciate it as I am wanting to get more information.

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Saganaga, these will help:
The OASIS website: http://www.udel.edu/bkirby/asperger/


Here's a site with many links:
http://users.wpi.edu/~trek/aspergers.html


Asperger Syndrome Coalition of the US:
http://www.asperger.org/index_asc.html


You can also do a search for Yahoo Groups or Delphi Forums on Aspergers - there is a very good forum connected with the OASIS website listed above.


HUGS

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Thank you guys for this! My child was dx ADHD this school year after last year dx'd with depression. So much of what you guys are talking about SING at me! I never thought anything about it could be anythign else till DS's IEP meeting today and they were ready to say there is nothing we can do till we started compairing notes and putting some peices together and 3 of them said 'Aspergers' at the same time. Not saying he has it, but it makes so much sense. The website links are also helping give me some other ideas for how to deal with DS. Everything we have tried in the past hasn't worked and it does make sense based on what I have read today. LOL- I have read so much my head is spinning. He is meeting with the new psychiatrist tomorrow- I will definately bring it up.
Now, to get DH tested... lol.

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I was wondering if any of you have tried any diet changes to help alliviate AS syptoms. Any positive results?
We've just started the Feingold diet & I'm looking into a wheat or dairy free diet.

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I just want to jump in here if that's ok, I have two cousins with autism and aspergers and I think I have some pretty bad sensory issues. Smells and sounds bother me that don't bother anyone else. Tags, jewelry and my hair bother me immensly. My mom use to get highly annoyed that I had to have the creases in my socks straight or I wouldn't let her put my shoes on, this at 3 years old.


My dh wears 2 different socks or one inside out and it drives me NUTS!!! One night in bed I asked him to get me socks because my feet were cold and I heard him at the drawer giggling. I yelled, YOU BETTER GEt ME MATCHING SOCKS, he was laughing contemplating getting me two diff socks.


I had an extremely difficult time nursing because people touching me bothers me sometimes. I could go on and on. I know I don't have aspergers, but could I join this thread for support?
Corrie

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just poking in....


maybe some of you moms can help this mom....sort of an allied question to your thread...


http://www.mothering.com/discussions/showthread.php?t=149349


tracy

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I'm 29. I haven't been formally diagnosed but doing all the research into my child's AS I kept finding how it described *me*. I'd always wondered what was "wrong" with me and now I know. :)


I cannot hold a conversation. I never know what to say. And when I do say something it's so far off tangent of whatever we may have been talking about.. I get lots of strange looks. lol I will never understand small talk, or skirting around the truth. Phrasing things tactfully. Waaaay beyond me!!


I also have the hardest time recognizing faces! It's so embarrassing and stressful. I can talk to someone for twenty minutes, and ten minutes later I wouldn't recognize them in passing. I have to remember clothes or hairstyle or a purse they are carrying or something..


I'm so glad to have found some Aspies!!


Erica
Mama to Ethan 7 AS
and Willow 4

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I'm a self-diagnosed Aspie. My official dx, years ago, was ADHD, but in comparing the 2, while there are a lot of similarites, the Aspergers symptoms fit me better. Sometimes it's fun.....it doesn't take much to amuse me, give me some kind of toy with a texture to it, and I'm busy for awhile. Somtimes it sucks......the clumsiness and social problems drive me nuts. Dh also has most of the symptoms. Which is probably why we get along so well, we understand each other. Not surprisingly, our youngest son, the only one that is genetically related to both of us, is autistic. It can make for entertaining conversations with his therapists. "What do you mean there is something "wrong" with smelling every object he picks up? Seems normal to me!" LOL
LOL I know! I drive my husband crazy when I find some little knick knack I have to have because I crave the color or the texture or just *something*.

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Eep! I totally forgot about this thread! Anyways I've been doing more research and I firmly believe that I do in fact have Aspergers. Actually I really have no doubt. It really explains alot about my kidhood and who I am today.


Does anyone else have a problem with empathy? I was telling my DH last night that I don't 'get' other people's problems. When someone is upset about something I am usually thinking about how it will affect me. It makes it very hard in parenting because when the kids need something or are upset about something that is infringing on 'my territory' (so to speak) I get really upset and cannot understand their side at all. It really makes DH mad and I can see it is starting to upset my child too. I AM trying but its hard.


I can so relate to all the stuff you've said. It would take me ages to list all my 'quirks' but a few noteable ones you've mentioned
- Noise. I can't stand little noises. I will lay awake at night panicking if there is water dripping off the eavestrough outside. My husband likes to have music playing all the time and it drives me nuts. I often have to turn it off and it makes him mad but I just can't take little noises. When I was younger we had a fish tank in the living room and I had to have the tv on full blast because all I could hear was the damn fish tank! I have to sleep with white noise because every little noise drives me nuts.
-People touching me. Sometimes I just can't stand to be touched! It makes it really hard with parenting because there are times when I have to forcefully push the kids off me and it makes them cry but I literally cannot stand to be touched sometimes. It makes my skin crawl. Lots of stuff makes my skin crawl.
SIB - From about age 12 to age 20 I was a cutter. I would cut my body with razor blades or knifes. Especially when I was upset about something. I stopped 6 months after my marriage when an incident occurred where my husband and I were in a big fight and I got really upset and went out to the living room (it was about 1 am) and started cutting my arms. He caught me and threatened to take me to the psych ward if I did it again. I still have to struggle not to do it.


There are so many other issues I couldn't discuss them all. Just a couple of other questions. Does anyone else have problems with telling too much personal information? I seem to say totally inappropriate things in social settings and I don't realize it until I really sit and think about it. It is really embarrassing. How do you do with making friends? I don't really have any. I have two - one from highschool and one from college but we don't live near each other, only talk on the phone usually. I have started many friendships since the kids were born, we'd make playdates but after a few times they don't want to get together with me anymore. I really don't understand what I'm doing wrong.


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I have the opposite problem with empathy. Sometimes I put myself in someone else's shoes too well. I over empathise. I also lose myself in other people's emotions. Most of the time I don't know what's mine and what is someone else's. But there are oftentimes when I too don't understand other's people's problems. It's not until the conversation is over and they've left that it hits me what they were trying to say and then it's too late.


Noise- noise really bothers me. Especially my child's vocal stims. I cannot concentrate and get completely overwhelmed trying to listen to someone speaking over any sort of noise-especially tv, radio or a/c units. I lose it when there is too much competing noise and it all gets jumbled. My husband can read a book while watching tv and listening to the radio while holding a conversation with me. That drives me absolutely to meltdown. It feels like being in a vaccuum.


People touching me-I have this too. I hate light touches, I have to rub them away. I like firm, hard squeezy touches. They help relax me. A stray hair on my skin somewhere overwhelms me and I MUST get it off. I can't concentrate on anything else but that hair.


SIB- I haven't given in to this urge in a long time. I too was a scraper (scraped until I bled) and a cutter. There was a time a year ago I had a complete meltdown and all I wanted to do was punch this bathroom mirror and use the pieces to cut my wrists. It obsessed me and it took all I had to fight it. I just wanted the emotional pain to stop, and physical pain heals..


I am totally the open book! It drives me very proper and 'hip' neighbor and perfect strangers to distraction. I've tried to learn from her about what is appropriate to share, how to phrase it.. I just don't get it.. How do you do small talk?


What you said about having friends sounds just like what I've gone through. I see people hanging out with GROUPS of friends. They have several friends that they are close to and they hang out. I never had that. I have acquaintances, or people who like that I'm kinda quirky and strange, but they aren't friends. We don't hang out or share our lives together.. I've kinda resolved myself to not ever understanding or having that.. I also sabotage things like that when I do get it. There have been several times that someone has tried to get close and it stressed and worried me so much to have to keep up the "normal" that I eventually just let them wander away to search somewhere else.. I get in my "wanna be alone" zone and it could last a day or weeks and NT's don't get that..


::hug I'm so glad to find I'm not alone!


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dropping in on your thread...looking for a little help


http://www.mothering.com/discussions/showthread.php?p=1749136#post1749136




tracy


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my child has as. i suspect i do as well.

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I see myself a little in this thread, I always thought I was shy and quirky :LOL. I can't hold a conversation about anything really unless it's the kids. Maybe I am just out of the loop who knows.


My ds does the licking of things, I mean everything. He will lick dirty windows, cars, the floor, rocks, the worst one is when he picks up tossed out gum on the ground and puts it in his mouth :gross. We have tried to tell him it's dirty but it doesn't get through. I personally have always thought he had adhd/odd, we are getting him evaluated soon.


Noise doesn't bother him, he actually seems to crave loud things. If the microwave is on he has to be right infront of it. The tv has to be very loud, the computer volume when he plays a game has to be loud. He talks and yells very loudly. I on the other hand can't stand all the noise! I can handle the dishwasher being on but loud voices, tv etc drive me bonkers. It makes my head hurt and I can't think at all.


If I'm trying to type something important out for dh's work I can't have anyone talking to me, the kids have to be quiet in another room. I freak out and lose my train of thought and I can't even type at all.

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The other parent
Hi, I am new to this forum. But with good intention, and wonder. I maybe adopting a kid who could have Autism. The father of the kid has mild Aspergers. Does anyone know how likely the kids chances are of being autistic?

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ShaggyDaddy
wow, a very old thread with a new question.


It has been proven that Autistic parents have a higher chance of having autistic kids. It is heavily debated, but statistically a kid has a greater chance of being Autistic if 1) he is a boy, and 2) if he has autistic people in his genetic line.


For instance, in my family: Me, my brother, my mother, my father, my child and some of my nephews all have forms of Autism. Only some of the women in my family are affected, but almost all of the boys are. 

This is of course anecdotal, but in general Autism is genetic and it is more frequent in boys.

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Since autism is more rare in girls (or is it really? Or does it just present differently?) are your chances for another kid with autism raised if you have a female kid with ASD?

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Since autism is more rare in girls (or is it really? Or does it just present differently?) are your chances for another kid with autism raised if you have a female kid with ASD?


good point, I did not specify.. boys are more likely to be diagnosed, not necessarily more often autistic.


The genetic research is very incomplete and there is really only theory at this point. Really anything anyone says is anecdotal at this point.


But to speak to the question to is he going to be autistic... the answer is nobody can really know.

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Hi, I am new to this forum. But with good intention, and wonder. I maybe adopting a kid who could have Autism. The father of the kid has mild Aspergers. Does anyone know how likely the kids chances are of being autistic?


Autistics are more likely to have autistic kids, but of course not always. Research is inconclusive. Anecdotally, my father was (undx'ed) autistic; he had a neurotypical son and an autistic daughter (me). I have, of my biological kids, one autistic girl, one very neurotypical boy, and one possible/maybe/likely autistic girl. My neurotypical brother has an autistic daughter as well.


So, you should probably keep in mind the possibility...

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From my own observations, experience and research... it really just seems to be much more difficult to diagnose in females. A lot of it seems to be a difference between external and internal expression... if that makes sense. IE, males are more likely to act their frustrations out, while females are more likely to internalize it. Hopefully that doesn't sound offensive, I'm usually the very LAST person to make gender distinctions, but that really seems to be the case.


As far as the original question goes, I just don't think there would be any way to know at this point. How old is the kid?


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Brigianna-- You posted while I was typing. :)


I would just like to say... I am in love with your senior title!!!!

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From my own observations, experience and research... it really just seems to be much more difficult to diagnose in females. A lot of it seems to be a difference between external and internal expression... if that makes sense. IE, males are more likely to act their frustrations out, while females are more likely to internalize it.


This is certainly anecdotally true in my family.




Brigianna-- You posted while I was typing. :)


I would just like to say... I am in love with your senior title!!!!
:lol thanks... most people don't get it.

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Hi, I am Sheila, new to this board but not to MDC.... my 12 year old son was Diagnosed with aspergers (sp?) 2 months ago. My 6 year old son is being tested now (thru the school) . My Dh has not been diagnosed I don't think he would go for the testing but I am about 100% sure he has it... I think he has some other issues as well- maybe depression... and anger issues. He totally can't read clues. He is a very challenging man to be with. We alsomost split up last year and in a lot of ways I kind of wish we had gone thru with it.


Anyway- about the dishwasher- we got one with a timer feature and I can set it to go on in the middle of the night when I am sound asleep, it is great! I don't know what I've got but the dishwasher, floresecent lights kill me!!! I especilly hate the lawn mower and the snow blower and the way my Dh starts adn stops them each like a million times. Each start and stop feels like an ice pick tp the head...


I am glad to have found this forum. I have 3 kids, all with differnt things going on... Oldest DS (12)with Aspergers and disgrphia (illegible hand writing at age 12) middle kid (DS age 6) had speach delays and he has something going on, so I am glad they are testing him and my DDd is 2 and she freaks out in stores, has to be carried all the time- at 30 lbs! And she has sensory issues as well as being non verbal. She gets help from Birth-3.

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I don't know what I've got but the dishwasher, floresecent lights kill me!!! I especilly hate the lawn mower and the snow blower and the way my Dh starts adn stops them each like a million times. Each start and stop feels like an ice pick tp the head...


Fluorescent lights....the ones with the electronic ballast are MUCH better than the old kind. They are coming out with more of the electronic ballast kind now. The old kind, in addition to the annoying flicker, also emits high levels of electromagnetic radiation...some of us can feel that.


Lawn mower... DH has a cordless electric kind. MUCH quieter, and the sounds are at a somewhat higher frequency, than the loud gas-powered ones, especially w/ the house windows shut. Now if I could only get all the neighbors to use an electric one, too :p When we had a smaller yard, we had a push reel mower. Now THAT was great, it sounded like a librarian... "shhh, shhh, shhh..."

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

Click here to read the full article…

How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But...

Don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

If your child suffers from Asperger’s Syndrome, expect him to experience both minor and major meltdowns over incidents that are part of daily life. He may have a major meltdown over a very small incident, or may experience a minor meltdown over something that is major. There is no way of telling how he is going to react about certain situations. However, there are many ways to help your child learn to control his emotions.

Click here for the full article...

Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

The standard disciplinary techniques that are recommended for “typical” teenagers do not take into account the many issues facing a child with a neurological disorder. Violent rages, self-injury, isolation-seeking tendencies and communication problems that arise due to auditory and sensory issues are just some of the behaviors that parents of teens with Aspergers will have to learn to control.

Parents need to come up with a consistent disciplinary plan ahead of time, and then present a united front and continually review their strategies for potential changes and improvements as the Aspergers teen develops and matures.

Click here to read the full article…

Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

Although they may vary slightly from person to person, children with Aspergers tend to have similar symptoms, the main ones being:

=> A need to know when everything is happening in order not to feel completely overwhelmed
=> A rigid insistence on routine (where any change can cause an emotional and physiological meltdown)
=> Difficulties with social functioning, particularly in the rough and tumble of a school environment
=> Obsessive interests, with a focus on one subject to the exclusion of all others
=> Sensory issues, where they are oversensitive to bright light, loud sounds and unpleasant smells
=> Social isolation and struggles to make friends due to a lack of empathy, and an inability to pick up on or understand social graces and cues (such as stopping talking and allowing others to speak)

Click here to read the full article…

Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent?

Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Parents face issues such as college preparation, vocational training, teaching independent living, and providing lifetime financial support for their child, if necessary. Meanwhile, their immature Aspergers teenager is often indifferent – and even hostile – to these concerns.

As you were raising your child, you imagined how he would be when he grew up. Maybe you envisioned him going to college, learning a skilled traded, getting a good job, or beginning his own family. But now that (once clear) vision may be dashed. You may be grieving the loss of the child you wish you had.

If you have an older teenager with Aspergers who has no clue where he is going in life, or if you have an “adult-child” with Aspergers still living at home (in his early 20s or beyond), here are the steps you will need to take in order to foster the development of self-reliance in this child.

Click here to read the full article…

My Aspergers Child - Syndicated Content