Aspergers & Picky Eating

Question

My son was diagnosed with Asperger’s in January, 2008. His
eating habits are not that great. He will only eat about 3
specific foods which are not at all healthy. How can I
introduce something new to him if he doesn’t like to try
anything new? Unless he has eaten it before, he will not
try it.

Answer

This is a common problem with people with Asperger’s. Some
AS adults will eat only three or four foods for months at a
time. For AS kids, many foods taste terrible to them (but
not to others) or have disgusting textures or smells. They
can’t help these reactions; they are a part of Asperger’s.
Unfortunately your son’s three choices are not healthy ones,
so he isn’t getting a balanced diet. For that reason, his
diet must change.

Your son’s diet should include protein from eggs, milk,
cheese, fish, beef, and chicken, pork, even hot dogs. He
needs grains, which provide B vitamins, from breads,
hamburger and hot dog buns, corn, and cereals. He needs
vitamins and minerals, including vitamin C, from juices,
fruits, and vegetables. He requires calcium and vitamin D
from milk and cheese. Getting him to eat these foods is the
challenge.

You will have to eliminate the three items he will eat from
your home and offer him a variety of other healthy foods,
letting him choose what he will eat from them. Prepare for
a battle royal when you do this! He may scream, cry, and
have “meltdowns” at every meal. But, when he gets hungry,
he will try at least some of the new foods. Whatever you
do, don’t give him any of his preferred three foods, or
they are all that he will eat and he will never try any of
the new foods. Needless to say, the rest of the family must
not eat his preferred foods, either.

Perhaps he would try some whole grain cereals. Many
children like Life cereal or Cheerios (with or without
milk). If he’ll eat the cereal, see if he likes a sliced
banana on it. Use Splenda to sweeten cereal, fruits, and
baked items. Try popcorn (a whole grain). Don’t load it up
with butter. Fruit juices may appeal to him. There are new
ones on the market that are delicious and have a serving of
fruit and one of vegetables in each glass. Try hot dogs and
hamburgers. He may like scrambled eggs. If he will drink
milk (even chocolate milk or a milkshake), it will give him
protein and calcium.

Try mixing rice or noodles into a cheese and chicken
casserole. Most children like macaroni and cheese. See if
he does. Try tacos made with whole grain tortillas,
hamburger, and cheese. Will he eat fried chicken or chicken
nuggets? How about fish and chips?

Many fruits may taste sour to him. Canned peaches and pears
are sweet and may appeal to him. Cut fruits into bite sized
pieces so they are easy to eat. Don’t chastise him if he
doesn’t eat them; maybe in the future he will. Make small
apple or blueberry muffins. Yoghurt with fruit is an option
you could try.

As far as vegetables are concerned, it may be an uphill
road! But, sometimes vegetables can be hidden in other
foods, for example, in those juices mentioned above. How
about putting some onion in his hamburger? Potatoes are
vegetables and he might eat oven-fried French fries (called
chips by the British). Blend some cooked cauliflower into
mashed potatoes. He may not notice the difference. He may
like sweet potatoes. He might like creamed corn or
cornbread. Does he eat any soups? You could try tomato
soup made with milk; he might like it or chicken noodle soup.

It’s very important not to make “a big deal” about what he
doesn’t eat. If you do, eating will become an even worse
power struggle than it’s going to be. Offer various new
foods at each meal. If he doesn’t like them, don’t make an
issue of it. He’ll eat something when he gets hungry!
Avoid serving soda pop and sweets so he doesn’t fixate on
them. When he finally accepts a new, healthy food, offer it
often, but not at every meal, so he has to keep trying new
foods.

My last suggestion is to make sure he has a multivitamin
each day. Get one that is chewable, tastes good, and has a
cute shape. Also, drinking Ensure or Pediasure is a good
way to supplement his diet with vitamins and minerals.

The Parenting Aspergers Resource Guide: A Complete
Resource Guide For Parents Who Have Children Diagnosed
With Aspergers Syndrome.

Asperger's Kids & Sleep Problems

The first known attempt to evaluate the sleep patterns of kids with ASPERGERS, taking into account sleep architecture and the cyclic alternating pattern (CAP), finds that kids with ASPERGERS have a high prevalence of some sleep disorders and mainly problems related to initiating sleep and sleep restlessness together with morning problems and daytime sleepiness, according to a new study.

The study, authored by Oliviero Bruni, MD, of the Center for Pediatric Sleep Disorders at University La Sapienza in Rome, Italy, focused on eight kids with ASPERGERS, 10 kids with autism and 12 healthy control kids. The parents of the kids with ASPERGERS filled out the following materials:

1. Sleep questionnaire.
2. Pediatric Daytime Sleepiness Scale, which evaluates the relationship between daytime sleepiness and school-related outcomes.
3. Autism Diagnostic Observation Schedule, a semi-structured, standardized assessment of communication, social interaction and play or imaginative use of materials for individuals who have been referred because of possible autism spectrum disorders.
4. Child Behavior Checklist, a questionnaire used to examine daytime behavior in kids.

In addition, the kids took the Wechsler Intelligence Scale for Kids, which measures verbal IQ, performance IQ and a full-scale IQ, and also underwent an overnight polysomnogram, or sleep study.

Several sleep parameters, such as time in bed, sleep period time, number of awakenings per hour, and sleep efficiency, were evaluated. CAP, a periodic EEG activity of non-REM sleep characterized by repeated spontaneous sequences of short-lived events (phase A) with the return to background activity identifying the interval that separates the repetitive elements (phase B), was also scored.

According to the results, 50 percent of the kids with ASPERGERS were reluctant to go to bed, while 75 percent felt a need for light or a television in the bedroom, 87 percent had difficulty getting to sleep at night and 75 percent fell asleep sweating. In addition, 50 percent felt unrefreshed when waking up in the morning, 87 percent had difficulty waking up in the morning and 87 percent felt sleepy during the day.

With respect to the CAP, in comparison to healthy controls, subjects with ASPERGERS showed a lower total CAP rate in the first two sleep stages, but not in slow wave sleep. In addition, they showed an increased percentage of synchronized EEG patterns and a decreased percentage of desynchronized EEG patterns. Further, the duration of the A and B phases, and consequently the entire CAP cycle, was longer. Compared to the kids with autism, ASPERGERS subjects showed an increased CAP rate in slow wave sleep and a decrease in the second sleep stage. The duration of the A phases was longer, as well as the CAP cycle duration.

This study showed peculiar CAP modifications in kids with ASPERGERS and represented an attempt to correlate the quantification of sleep EEG oscillations with the degree of mental ability or disability.

ASPERGERS is one of several autism spectrum disorders (ASDs) characterized by difficulties in social interaction and by restricted and stereotyped interests and activities. ASPERGERS is distinguished from the other ASDs in having no general delay in language or cognitive development. Although it is not mentioned in standard diagnostic criteria, there are frequent reports of motor clumsiness and atypical use of language.

It is recommended that kids in pre-school sleep between 11-13 hours a night, school-aged kids between 10-11 hours of sleep a night, and adolescents about nine hours a night.

The American Academy of Sleep Medicine (AASM) offers some tips to help your youngster sleep better:

· At bedtime, do not allow your youngster to have foods or drinks that contain caffeine. This includes chocolate and sodas. Try not to give him or her any medicine that has a stimulant at bedtime. This includes cough medicines and decongestants.
· Do not let your youngster fall asleep while being held, rocked, fed a bottle, or while nursing.
· Establish a relaxing setting at bedtime.
· Follow a consistent bedtime routine. Set aside 10 to 30 minutes to get your youngster ready to go to sleep each night.
· Interact with your youngster at bedtime. Don't let the TV, computer or video games take your place.
· Keep your kids from TV programs, movies, and video games that are not right for their age.

Kids are encouraged to inform their parents of any sleep problems they may have. Moms & dads who suspect that their youngster might be suffering from a sleep disorder are encouraged to consult with their youngster's pediatrician or a sleep specialist.

The Parenting Aspergers Resource Guide: A Complete
Resource Guide For Parents Who Have Children Diagnosed
With Aspergers Syndrome.

Aspergers & Bereavement

Question

We lost my father-in-law last year. My 12-year-old son with Asperger’s is totally devastated. It is not helped by the fact that he spends the time before school and after school at his Grandma’s house and is constantly reminded of Granddad’s absence by his empty chair. Due to the fact that I have to work full time, my sons have spent much of their time from Monday to Friday with their grandparents so it is like their second home - they even have their own bedrooms there! I am finding it very difficult to help him come to terms with Granddad’s death. I bought a book from the National Autistic Society but it doesn’t seem to be helping. He is OK most of the time, but will then fall into a black mood and will overreact to the slightest incident and go into a meltdown. Do you have any advice on what I can do to help him?

Answer

This is a sad and difficult situation for all of you. As you know, Asperger’s Syndrome is a neurobiological disorder. Children with Asperger’s Syndrome have difficulties with social interaction and responses to social situations. With regard to the emotional aspects of death and grief, your son may react, as you have seen, by getting upset or angry. These reactions occur because he doesn’t fully understand what has happened and why it happened, and, due to his Asperger’s, doesn’t know how to ask for help in handling the death of his grandfather. Many people without Asperger’s react to a death with anger and despair, too.

Many children with Aspergers feel that if a beloved relative dies, a “rule” has been broken (i.e.; good people should not die) and they feel very hurt. So, when it happens, the child feels betrayed. This can lead to anger and outbursts. In addition, any unexpected event is particularly difficult. You son finds it hard to grieve and doesn’t know how to handle his feelings of despair and sadness. He may not be able to express his grief through tears or talking.

Even if your son can’t ask for help, it is definitely called for in this situation. Patience, understanding, and support on your part are required. Be sensitive to his need to talk if he exhibits one and don’t put up barriers to it, such as telling him he’s too young to understand what happened. If he doesn’t show a need to discuss the death, you should open a discussion anyway. It may be wise to ask a counsellor or psychologist to talk with him, too.

Children with Aspergers have average or higher levels of intelligence and will appreciate honest, simple explanations about death and grief. Explain that birth is the beginning of life and death is the end of life and that, when someone dies, we feel bad because we loved the person, didn’t want him to die, and we will miss him. Don’t tell him his grandfather “went to sleep,” “went away,” “got sick,” that only old people die, or that the death was “God’s will.” All of these are open to misinterpretations, such as “If I go to sleep when I’m sick, will I die?” Or, “Will God make me die?” At his age, your son is able to understand that death is irreversible and that he will die eventually, but he needs reassurance that he will most likely live a long time.

Some questions your son asks may seem insensitive, for example, “Are you going to die, Mom?” He may show curiosity about dead animals or ask about what happens physically to dead things. These questions may seem gruesome, but they are a way of learning about death. Children should not be made to feel guilty or embarrassed about their curiosity.

Your son may feel that the death of his grandfather, who was a good person, was unfair. This is the time to gently explain that many things that happen in life are not fair and that we should try to help each other cope when unfair things happen. Perhaps, discussing some nice things to do for his grandmother would help him feel needed. Many Aspies respond very well to being needed by others.

Your son will need a lot of time to accept this death and may react with anger at unexpected times. Be understanding. Time will help ease the pain. Use books to help him understand and provide a good model of acceptable behavior for him. Also, keeping a journal of his thoughts about his grandfather may help.


P.S.

Moms and dads should be aware of normal childhood responses to a death in the family, as well as signs when a youngster is having difficulty coping with grief. It is normal during the weeks following the death for some kids to feel immediate grief or persist in the belief that the family member may “come back” someday. However, long-term denial of the death or avoidance of grief can be emotionally unhealthy and can later lead to more severe problems.

Once kids accept the death, they are likely to display their feelings of sadness on and off over a long period of time, and often at unexpected moments. The surviving relatives should spend as much time as possible with the youngster, making it clear that the youngster has permission to show his feelings openly or freely.

The person who has died was essential to the stability of the youngster's world, and anger is a natural reaction. The anger may be revealed in boisterous play, nightmares, irritability, or a variety of other behaviors. Often the youngster will show anger towards the surviving family members.

Kids who are having serious problems with grief and loss may show one or more of these signs:

• acting much younger for an extended period
• an extended period of depression in which the youngster loses interest in daily activities and events
• excessively imitating the dead person
• inability to sleep, loss of appetite, prolonged fear of being alone
• repeated statements of wanting to join the dead person
• sharp drop in school performance or refusal to attend school
• withdrawal from friends, or

If these signs persist, professional help may be needed. A child and adolescent psychiatrist or other qualified mental health professional that specializes in Aspergers can help your son accept the death of his sister and assist the others in helping him through the mourning process.

The Aspergers Comprehensive Handbook

What does it mean to have Aspergers?

Aspergers is not widely recognized by the public or by health care providers. What does it mean to have Aspergers? Do they have severe AD/HD, mild autism, learning disabilities, or are they just “nerds?”

For years, psychiatrists have debated how to classify and subdivide the category of Pervasive Developmental Disorder (PDD). Pervasive Developmental Disorder is a category that contains several specific diagnoses. Individuals with PDD have problems with the social interaction and often show delays in several other areas. These other areas may include language, coordination, imaginative activities, and intellectual functioning. The degree of severity can vary tremendously in the various forms of PDD. Autism is one of the more severe forms of PDD. An individual with Autism has marked difficulty relating to other human beings. He or she frequently has delayed or absent speech and may be mentally retarded. Aspergers is on the milder end of PDD. Individuals with Aspergers generally have normal intelligence and normal early language acquisition. However, they show difficulties with social interactions and non-verbal communications. They may also show perseverative or repetitive behaviors.

The Young Aspergers kid: A preschool aged Aspergers kid might show difficulty understanding the basics of social interaction. He or she may have difficulty picking up social cues. He may want friends but be unable to make or keep any friends.

Elementary School Aged Aspergers kid: One often hears the phrase, “poor pragmatic language skills.” This means that the individual cannot use the right tone and volume of speech. He may stand too close or make poor eye contact. He may have trouble understanding age-appropriate humor and slang expressions. Many are clumsy and have visual-perceptual difficulties. Learning difficulties, subtle or severe, are common. The Aspergers kid may become fixated on a particular topic and bore others with frequent or repetitive talk even when the other kids have given clear signals that they are no longer interested in the topic. Some have difficulties tolerating changes in their daily routine. Change must be introduced gradually.

The Teenager: This may be the most difficult time for an individual with Aspergers. Those with milder forms of the disorder may first come to treatment when they are in middle school. In adolescence, social demands become more complex. Subtle social nuances become important. Some may show an increase in oppositional or aggressive behavior. Individuals with Aspergers have difficulty understanding which of their peers might want to be a friend. A socially marginal boy might try to date the most popular girl in his class. He will probably experience rejection. He is unaware that some other girl might accept his invitation. Because of his social naiveté, he may not realize when someone is trying to take advantage of him. He can be especially vulnerable to manipulation and peer pressure.

Adulthood: There is less information on Aspergers in adulthood. Some individuals with mild Aspergers are able to learn to compensate. They become indistinguishable form everyone else. They marry, hold a job and have kids. Other individuals live an isolated existence with continuing severe difficulties in social and occupational functioning. Individuals with Asperger’s often do well in jobs that require technical skill but little social finesse. Some do well with predictable repetitive work. Others relish the challenge of intricate technical problem solving. I knew a man, now deceased, who had many of the characteristics of Aspergers. He lived with his mother and had few social contacts. When he visited relatives, he did not seem to understand how to integrate himself into their household routine. When the relatives would explain the situation to him, he was able to accept it. However, he was unable to generalize this to similar situations. Although he was a psychologist, his work involved technical advisory work, not face-to-face clinical sessions.

Associated Difficulties: Aspergers may be associated with learning difficulties and attention deficit disorder. Indeed, many kids and adolescents with Aspergers have previously been diagnosed with AD/HD instead of Aspergers. Individuals with AD/HD may have difficulty with social interaction, but the primary difficulties are inattention, hyperactivity and impulsivity. In individuals with Aspergers, the social awkwardness is a greater concern. As individuals with Aspergers enter adolescence, they become acutely aware of their differences. This may lead to depression and anxiety. The depression, if not treated, may persist into adulthood.

Treatment for Aspergers :

Medications: There is no one specific medication for Aspergers. Some are on no medication. In other cases, we treat specific target symptoms. One might use a stimulant for inattention and hyperactivity. An SSRI such as Paxil, Prozac or Zoloft might help with obsessions or perseveration. The SSRIs can also help associated depression and anxiety. In individuals with stereotyped movements, agitation and idiosyncratic thinking, we may use a low dose antipsychotic such as risperidone.

Social Skills Training: This is one of the most important facets of treatment for all age groups. I often tell moms & dads and teachers that the individual needs to learn body language as an adult learns a foreign language. The individual with Aspergers must learn concrete rules for eye contact, social distance and the use of slang. Global empathy is difficult, but they can learn to look for specific signs that indicate another individual’s emotional state. Social skills are often best practiced in a small group setting. Such groups serve more than one function. They give people a chance to learn and practice concrete rules of interpersonal engagement. They may also be a way for the participant to meet others like himself. Individuals with Aspergers do best in groups with similar individuals. If the group consists of street-wise, antisocial peers, the Aspergers individual may retreat into himself or be dominated by the other members.

Educational Interventions: Because Aspergers covers a wide range of ability levels the school must individualize programming for each student with Aspergers. Teachers need to be aware that the student may mumble or refuse to look him in the eye. Teachers should notify the student in advance about changers in the school routine. The student may need to have a safe place where he can retreat if he becomes over stimulated. It may be difficult to program for a very bright student with greater deficits. In one case, a student attended gifted classes but also had an aide to help her with interpersonal issues. That student is now in college. Kids with Asperger’s are often socially naive. They may not do well in an Emotionally Disturbed class if most of the other students are aggressive, street-wise and manipulative. I have seen some do well when placed with other students with pervasive developmental disorders. Some do well in a regular classroom with extra support. This extra help might include an instructional assistant, resource room or extra training for the primary teacher.

Psychotherapy: Individuals with Aspergers may have trouble with a therapist who insists that they make an early intense emotional contact. The therapist may need to proceed slowly and avoid more emotional intensity than the patient can handle. Concrete, behavioral techniques often work best. Play can be helpful in a limited way if the therapist uses it to teach way of interaction of the therapist uses play as a break form an emotionally tense if it is used to lower emotional tension. Adults and kids may also do well in group therapy. Support groups can also be helpful.

Moms & dads play an important role in helping their Aspergers kid or adolescent. This Aspergers kid or adolescent will require time and extra nurturance. It is important to distinguish between willful disobedience and misunderstanding of social cues. It is also important to sense when the Aspergers kid is entering emotional overload so that one can reduce tension. They may need to prepare the Aspergers kid for changes in the daily routine. One must choose babysitters carefully. Moms & dads may have to take an active role in arranging appropriate play dates for the younger Aspergers kid. Some moms & dads seek out families with similar kids. Kids with Aspergers often get along with similar playmates. Moms & dads should help teachers understand the world from the Aspergers kid’s unique point of view. Parenting an adolescent with Aspergers can be a great challenge. The socially naive adolescent may not be ready for the same degree of freedom as his peers. Often moms & dads can find a slightly older adolescent who can be a mentor. This person can help the adolescent understand how to dress, and how to use the current slang. If the mentor attends the same school, he can often give clues about the cliques in that particular setting.

Adults may benefit from group therapy or individual behavioral therapy. Some speech therapists have experience working with adults on pragmatic language skills. Behavioral coaching, a relatively new type of intervention, can help the adult with Aspergers organize and prioritize his daily activities. Adults may need medication for associated problems such as depression or anxiety. It is important to understand the needs and desires of that particular adult. Some adults do not need treatment. They may find jobs that fit their areas of strength. They may have smaller social circles, and some idiosyncratic behaviors, but they may still be productive and fulfilled.

The Parenting Aspergers Resource Guide: A Complete
Resource Guide For Parents Who Have Children Diagnosed
With Aspergers Syndrome.

Thoughts of an adult with Aspergers

I recently received a really insightful email from a woman with Aspergers (Trudy) and with her permission really wanted to share it with you. I have left the email virtually intact so that the words are direct from Trudy and not edited in any way by me …

“Hi ! I just needed to write to you, after reading an email I received of this week’s Aspergers question. I am 33 & a mother of 6, I have lived my whole life not knowing that I had a name, “Aspergers” it made sense when I learned about myself, “the condition”. I have to say that I am not satisfied with the way Aspergers are being treated, to me it is as if we are in the dark ages, & going about it all wrong!!! I am no expert, no do I have any qualifications to show, but I do know what it is like to be “me”.

We are no different to gay people who are programmed from a young age not to act gay, humanity has finally accepted they are “different from our condition”, so why can’t the Aspergers people sit and stim, along side a gay man embellishing his gestures? I was raised strict ,and by that I mean, they taught me to be a perfect model human, no sign of my aspergers was allowed to stay, & I have trouble now even getting people to believe that I am different. I do it sooo well, I even had the marriage & kids, the job the big home, friends & went along as a puppet! Not happy, but normal in the eyes of others, my aspie self still inside, but crying, just the way gay people talk about the way they tried to deny that part of them, ….it hurts! & that’s why we stim. Just like an itchy turtleneck jumper & tight shoes make me feel, so does the rules of correct behaviour! (some of which make no sense, like lies or contradictions) & no matter how long you put that jumper on me, I will never get used to it. I will only bare it for so long until I will SNAP and scream, so to with society’s expectations of me!

Yes, let us know about what is normal to “you” , we “need” the info to understand you! PLEASE STOP TEACHING US TO “BE” NORMAL, spend all of your efforts on teaching those around us how to accept us & you will see how beautiful as aspergers can be, & we will stop most of the withdrawing behaviour all by ourselves, WE ARE QUITE BRIGHT U KNOW! …..and we DO have feelings just that they don’t show unless we feel safe to be ourselves & comfortable with the surrounding human input! So stay calm, and just talk to us, we take in phenomenal amounts of info, but we see “more” than u. We see a lot of the inaccuracies in your gestures, as compared to your speech, we hear more, like the speech patterns & vague inaccuracies in your tone compared to what is being said & those mixed messages are what confuses us. We are living lie detectors but u imagine how complicated the world is then! Learn how to be honest around us, we benefit greatly! If u are feeling something, tell us, but don’t be a drama queen. We are very sensitive & to us, it is just like another sense along side sight & touch etc…& we get overwhelmed by it & we cant describe it!

Have u noticed that aspies like using computers and prefer the words without emotional attachments! Telephones are bad as we can still hear the confusing stuff, just like in person, but worse, as we lack the input of a face & gestures,… but u may see an aspie that wont look at u,… well.. they are not comfortable with something that is coming out of u. They detect a lie & are looking away to save themselves from the confusing info. But we also look away from u if we are attempting a lie, as we think that u can see it, the way we can! ..Yes, we need to practice being around u ,but u need to learn to be around us even more!!! as I think QUITE FRANKLY, normals are the slow learners!

anyway enough for now!!!
please …& I mean…PLEASE email me back
as I need to know if u got this message & what u got from my speech
(and tell the truth, as I don’t mind)
you don’t need to say much & I don’t mind if its short at all
thanks for reading!
Trudy Beckham”


15 comments »

1.

Trudy, your words brought tears to my eyes. It has taken me 13 years to see the beauty of my son and his ability rather than his dis-ability because, like you, I was raised to be a ‘good girl’ and to be ‘normal’ and do what was expected of me.
Fortunately my son has been good at pointing out the error of my ways and my inconsistencies, and the lies I was telling myself although I didn’t realise it.
I am working more and more with other parents or partners of undiagnosed Aspies and helping them to let go of their predetermined social rules. As they do this they start to see the joy and the liberation that Aspies are bringing for us all. You don’t have to be an Aspie to resent social conditioning! Many people are then going on to discover their own sensitive natures that were squashed or repressed in their attempt to ‘fit in’. Many of these non-Aspies also discover their Aspie tendencies - not enough to necessarily be diagnosed with it, but certainly to be able to step further into their son’s, daughter’s or partner’s world. In the process they are healing so many of their own hurts, as I have been called to do by my son. He has needed me to do this so that I can allow him to be who he is, and as I do that, I am also freeing myself. EFT (emotional freedom techniques) is a great help in this respect, and I love helping those whose life purpose it is to bring truth to the planet.

ALL Power to the Aspie elbow I say - let’s all open our ears to what they have to tell us and rediscover the joy of being true to ourselves.
Thank you Trudy for your courage and your commitment to yourself.
love
Marian

Comment by Marian — February 7, 2009 @ 12:12 pm

2.

OMG!!!!!!!!!!
This explanation is so exact! We have struggled to put our thoughts together for a Cliff Notes version that everyone can understand. You nailed it! Thank you. I will share this with my nearly 100 families on our listserve and all special ed staff at Ocean View School District in Huntington Beach, California. We are grateful!

Comment by Laura Pratto — February 7, 2009 @ 12:14 pm

3.

Hi Trudy, I’m an adult with Asperger’s, too.

It’s interesting that you compare your experiences to that of a gay person. There are certainly a lot of similarities.

And just as no two gay people have exactly the same feelings or experiences, no two Aspies are alike. I would gently suggest that that your letter not be held up as an example of “what we are like”. This is what YOU are like. You don’t speak for me or anyone else.

Myself, I’ve had my rough spots in life, but I am learning to deal with it. That’s all we can do, right? Of course, I’m lucky that I have family members (especially my husband) who are aware and understand. I do not consider myself oppressed. I suppose you could say I’m still “in the closet”, because I don’t wear my diagnosis on my sleeve. I have Asperger’s, but I refuse to be defined by it.

Another metaphor could be the act of moving to a different country. You are the foreigner; you don’t speak the language, you don’t know the customs. It would be preposterous to expect your new home to change for you, so you learn to adapt. You do what you need to do to survive. You will never truly be the same as a native person, nor should anyone expect you to be…but with experience, you grow, and you learn, and you develop. Because we all do what we have to do to survive.

BTW, I can completely sympathise (surprise!) with your rant, because I’ve had a lot of the same feelings too.

Do you have any obsessive interests? I find a lot of comfort in mine.

Cheers,

Vicky

Comment by Vicky — February 7, 2009 @ 12:48 pm

4.

I totally agree with what you said. My son is 10 and is told to stop doing this or stop doing that beacause it isn’t right. I’m sick of hearing it. This is the way he is and i don’t want him to change. I love his knowledge, behavors, thoughts and everything else about him. School is the worst enviroment for kids with AS because they are expected to act a certain way. Well too bad because my son is who he is and that is his normal. Get used to it.

Comment by cheryl — February 7, 2009 @ 1:04 pm

5.

I just explained to my (currently undiagosed but very confused and unhappy) 14 yr old son that I too have some Aspie traits - but I now try to celebrate, embrace and use them. That only happened after age 40, when I began self-directed health research on my son’s cleft condition after his birth. I was greatly “validated” by getting a few research awards, speaking on a physician’s panel, and receiving a University equivalency to attend the Univ. of Calgary med school and take grad classes in health sciences. THERE IS A PLACE IN THIS WORLD FOR ALL OF US!! and how much happier we are when we find it… thank you Trudy for sharing what it’s like to be you, and peace to you. I too do EFT (see http://www.emofree.com) and it has helped me greatly too; and reading the comments above, I realized I must encourage this unhappy boy to get back to doing his tapping…

Comment by Jacalyn Miller — February 7, 2009 @ 1:14 pm

6.

Thank you Trudy:
For sharing what your life has been like. I am raising my 9 yr old grandson with Asperger, he is a very awesome child. He has his moments with the meltdowns we have learned to redirect him. Also, no yelling allowed in the home that helps. We give him his choices on his clothing, TShirts and things he feels comfortable with. Also, we also make him “feel” a big part of our family. Also with anxiety, we don’t disapoint him with things or try not to as he can not cope with that.
I try to get a feel for what the world of stimming is to him. we give him his space with that. He does not do that in school. He knows he is different. He is a very bright boy. we encourage him daily. He loves to Read, and play on the computer and games. He is very bright!

Comment by Valerie — February 7, 2009 @ 1:29 pm

7.

Thank you for sharing about what Asperger’s is like for you. I too am a mother of 6, also with Asperger’s. My husband shares this as well. We have been persecuted as parents because we do not “act” like other parents and do not communicate in the same manner. The schools see as indifferent or not caring about our children, when this is as far from the truth as you could get! The state thinks that we cannot be good parents because we have Asperger’s. They think that because we do not show emotions “like we should” that our children will suffer and not learn how to be “normal”. Which is funny, since growing up, I always thought I was the normal one, and the others were different!

Comment by Stacy — February 7, 2009 @ 1:46 pm

8.

BRAVO!

I only learned that I have Aspergers’ after my grandson was diagnosed.

I too have always had a way of telling liars from people telling the truth, and it always got me in trouble when I would tell them or someone else ” that is not true”, or “That is someone you can’t believe or trust”. It even happened with an Episcopal Priest who thought at times he was God…and he SAID that in a Sunday School class, but no one believed me when I said he was a faker… until he was found out and defrocked many years after.

The same with a church secretary who I saw through on my first meeting,…she was all fuss and bother …and has just last month been arrested for embezeling the chruch’s money.

Sometimes people should look at us as “gifted with insight” , not “disabled!”

My grandson is the same, he sees through people who are in positions of authority for the wrong reasons and has had issues with one particular Boy Scout leader for years, because he has motives for his own sons’ advancement and not the others in the troop.He has achieved his Eagle in spite of this man , but it took some doing!

We knew when he was repeating the question instead of answering it as a toddler he had some ” glitch” in him, but only when he was a Junior in high school, after all those years of talking to himself and being punished in school for it, did we find out it was Aspergers! Now we treat his ideosyncracies like ” just Jimmy” instead of as a ” condidtion”.

I never knew I was anythingother than ” just me”, but I knew I was different from most other people. Aspergers does not have to be a ” handicap”. I agree more teachers and others ought to learn about us and accept us!

Comment by Catherine Cline — February 7, 2009 @ 1:57 pm

9.

I am appalled that someone would equate a medical condition with a life style choice. Shame on you.

Comment by Sandy — February 7, 2009 @ 4:10 pm

10.

@Valerie - One line in your comment jumped right out at me:

“Also with anxiety, we don’t disapoint him with things or try not to as he can not cope with that.”

I can relate - I get incredibly anxious and ‘prickly’ when things don’t go my way. Little things that wouldn’t bother other people, I suppose.

With life experience, I have learned to cope. I certainly don’t *like* to, but I do, and I feel I am a better person because I can. After all, disappointment is a part of life and we do ourselves no favours by avoiding it. Hopefully your son will learn this, too.

@Stacy - See, that is exactly why I don’t go ’round telling people about my ‘condition’. People fear what they don’t understand, and most people don’t understand Asperger’s.

@Sandy - I think you’ve completely missed the point. If you know anything about being gay (and I know a LOT about being gay *wink*), you can appreciate that there are some definite similarities in the EXPERIENCE of feeling inherently different from the rest of society. Some may argue further that homosexuality and autism are neither medical conditions nor ‘choices’, but I’m not gonna go there.

To be honest, I think it’s great that everyone’s happy to be different, but acceptance works both ways. Wider society ought to appreciate our talents rather than trying to make us conform, and we need to learn to cope as best we can in a world that isn’t made for us. There are times where we NEED to do things we don’t like to do - like talk on the phone, talk to people, deal with disappointment - and do it in a competent, coherent way. The world is cruel, but we CAN cope!

Comment by Vicky — February 7, 2009 @ 9:24 pm

11.

Its Always good to hear from another persons point of view, especially when they may be like minded,I am especially encouraged to see another female aspie since my daughter is now 14 it was very hard to get any comparisions or insight into just how things will go but like Trudy and the other girls here , shes great very challenging ( but what 14 year old girl isnt , if they are not perhaps they are just good at lying …lol) as she always simply tells it like it is but as she is stabilising through these teen years which are hard for any person at all she extremely intelligent and always can think outside the box , can be helpful and loving in a way she;s comfortable with and often is just misconstrued as having a wicked sense of humour , the older she gets the more i learn from her as always she will tell me in no uncertain terms :)other people laugh at different things and so she wants to laugh at an old lady whose hair looks like a fluffy cloud so what ….? im just trying to battle with her to keep it down but i think she is like any other child trying to nestle into society because quite frankly, there are many “normal kids” and think thank god she doesnt carry on like that!!anyway I could waffle on all day but its great to hear from someone who has direct experience ( always the best in my view point) in to life further down the line .
well done Trudy and good on you to all the rest of you who refuse not to stop being you just to conform.

Comment by helen hanson — February 7, 2009 @ 10:40 pm

12.

Wow! Everyone, thank you so much for sharing. I am learning how to better understand and serve my 15 year old boy. I am gaining insight into the reasons and motives for the way he does things. Its like finding the key to a very important room - a room with the most important things in your life that you have been locked out of. My son’s ways have been a mystery to me. But your transparency and forthrightness has helped me tremendously.
He was just diagnosed at 13 and since that time I have been searching out resources to help him to maximize the life God has given him. It seems that this message board is the best resource I have found so far.
I wouldn’t compare homosexuality with a medical condition either. Yet I do get your point - noone should have to live a lie.

What you have shared has given me so much insight into the motivations - reasons for the actions of my son. I have been greatly enlightened and with that enlightenment comes a sense of freedom to let him be himself. I am really starting to get it.

Comment by T Scott — February 8, 2009 @ 12:39 am

13.

This is bang on. I have one question? Are there any women out there with aspergers going through the menopause? I’m struggling double time far more emotinally than physically. Thanks. Heidi

Comment by Heidi Sands — February 8, 2009 @ 5:58 am

14.

Thanks for the input people - this really helps! I find my son with Asperger’s has a wonderful gift of being able to “read” people and I LOVE IT!!! His impressions of people are spot on too!! lol

Comment by J. Valleriani — February 8, 2009 @ 2:32 pm

15.

My son has aspergers and he has said the same thing he wishes that people understood what it feels like to be him i think my son is perfect and i fight for him in school to be treated like a person not a child that is stupid he is very bright. You’re message is very clear now if we could just get the people to understand it. After all we all have something different about us or a little quirk that we do.

Comment by stephanie a — February 8, 2009 @ 2:45 pm

The Parenting Aspergers Resource Guide: A Complete
Resource Guide For Parents Who Have Children Diagnosed
With Aspergers Syndrome.

My teenaged son with Aspergers goes crazy when he sees women’s feet...

Question

My teenage son with Aspergers goes crazy when he sees women’s feet. He likes to touch them. I can’t go out anywhere because I always have this problem. When I try to stop him, he turns violent and tries to hit me or hits himself. What can I do to help him?

Answer

Teens with Aspergers have a difficult time understanding sexual feelings and appropriate actions regarding sexual activities. Many times, the sexual interests of people with Aspergers, at your son’s age, are one-sided, not reciprocal, as it is when he touches the feet of women he doesn’t know. As you have seen, this results in some terribly difficult situations. Your son is unable to understand the rules that govern this type of behavior; he only knows that he must (as far as he is concerned) touch those feet! He misunderstands the situation and acts too intense and very inappropriately. His frustration when you try to stop him results in violence.

If all sense of proportion is lost, a fetish/obsession like his can lead to a criminal offense. A lack of concern for others can result in an assault that is damaging. People with Aspergers often lack insight into the feelings of others and deny responsibility for their actions; this is an inability to see inappropriate behavior as others see it. This situation is very serious because of the potential for arrest and prosecution. Sit him down and explain to him very graphically how the women feel when he approaches them and touches them. He must understand that they are terrified, don’t know what to do, and upset because this type of behavior in public is illegal. Tell him he could be arrested and put in jail. Repeat this – over and over.

Adults with Asperger’s, who have average or above IQs, report a high frequency of obsessions and compulsions that are intrusive, upsetting, and overwhelming.

People with Aspergers tend to be obsessive about their interests, so it’s no surprise that a lot of them are obsessed with sex. Reports have been made regarding these obsessions, but they haven’t been studied much. Sexual obsessions are more commonly reported by people with Aspergers who also were diagnosed with Obssessive/Compulsive Disorder. Compulsions occupied at least one to three hours per day in 26%, and 56% reported anxiety if prevented from performing their rituals.

It’s difficult to determine if your son’s behavior is distinct as a sexually offensive behavior or one that is a manifestation of Aspergers, or both. The two are merged. He will continue this behavior unless intensive treatment is provided. His insight and ability to stop is extremely limited and you are not able to control him at his age and size.

Your son may well need professional counseling support. Consult with a psychotherapist familiar with both sexually offending behaviors and pervasive developmental disorders. Family psychotherapy and careful supervision are warranted. The therapist may recommend that he participate in group social skills training and group treatment for adolescents with sexually offending behaviors and pervasive developmental disabilities. A therapeutic, highly structured and supervised educational program would seem necessary.

Individuals with ASD who have obsessive-compulsive symptoms may benefit from standard treatments for OCD such as serotonin reuptake inhibitors as well as cognitive and behavioral therapies. Serotonergic drugs can reduce obsessions, although finding the right drug may take time and, once found, its effect may be partial and temporary. Also as ever; be mindful of any side effects.

The sooner you arrange for your son to get some help, the better.

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome