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

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Problems with Proper Diagnosis: Is it Adjustment Disorder or High-Functioning Autism?

"We have a 2½ year old son with Alpha-1 Antitrypsin Deficiency and some other undiagnosed problems. When we did the routine screening at his Pedi’s office, the Pedi said he showed possible Autism and wanted us to see a behavioral specialist. When we went to see her, my sister and I showed her a couple of videos of him “blacking out” during one of his meltdowns and hurting himself.   We explained to her his sensory and tactile issues and other things we had noticed.  This was the winter of 2015 when he was just 1½.  She said “I don’t think he has Autism because he makes eye contact occasionally and has good interaction with us.  I think he is pretending and acting this way because he does not feel good and he knows if he does this he can be left alone.”  With that we left and drove the 1 hour 45 min back home.  Now he still have the same behavior and he is not only hurting himself (he just punched himself in the lip) but he is becoming aggressive towards others.  The babysitter and I say he gets an “I’m going to kill you look.”  My mom says his eyes go glassy. He is gluten and casein free because a biopsy revealed those enzymes are there but don’t work fully/properly. 

Becoming concerned I emailed the behaviorist and she emailed me back saying my son needed to see a psychologist, in which a immediately made an appointment.   Again the psychologist could not put a true diagnosis on him because he said he could not find anything about Alpha-1 and behavior problems so he didn’t know if it was related to that.  I asked him if my son could possibly have Asperger's, and he said that he could not diagnose him with that because that diagnosis has been taken out of the medical books. He ended up diagnosing him with Adjustment Disorder- nonspecific, and said he was developmentally and environmentally delayed.   I don’t know what to do and no one (even the sitter) understands him and just want to spank him and punish him all day long.  I know there are times he needs to be put in time out but my husband and I are getting frustrated."



Answer:

Re: We have a 2½ year old son with Alpha-1 Antitrypsin Deficiency and some other undiagnosed problems.

This condition definitely has an impact on both behavior and mood (i.e., there is a correlation between A1AD and acting-out, but not necessarily a causal relationship).

Re: When we did the routine screening at his Pedi’s office, the Pedi said he showed possible Autism and wanted us to see a behavioral specialist. When we went to see her, my sister and I showed her a couple of videos of him “Blacking out” during one of his meltdowns and hurting himself.   We explained to her his sensory and tactile issues and other things we had noticed.  This was the summer of 2011 when he was just 1½.


It’s hard to diagnose any child with a developmental disorder at 2½. Based solely on what I’ve read throughout your email, it does sound like High-Functioning Autism (HFA).

Re: She said “I don’t think he has Autism because he makes eye contact occasionally and has good interaction with us.  I think he is pretending and acting this way because he does not feel good and he knows if he does this he can be left alone.”

This wouldn’t be inconsistent with HFA.

Re: With that we left and drove the 1hour 45 min back home.  Now he still have the same behavior and he is not only hurting himself (he just punched himself in the lip 4/13/12) but he is becoming aggressive towards others.  The babysitter and I say he gets an “I’m going to kill you look.”  My mom says his eyes go glassy.

He acts this way because he is stressed, and he is attempting to relieve this stress through physically acting-out because he hasn’t learned to express feelings using words yet.

Re: He is gluten and casein free because a biopsy revealed those enzymes are there but don’t work fully/properly.  

Good!

Re: Becoming concerned I emailed the behaviorist and she emailed me back saying my son needed to see a psychologist, in which an immediately made an appointment.   Again the psychologist could not put a true diagnosis on him because he said he could not find anything about Alpha-1 and behavior problems so he didn’t know if it was related to that.

It’s true that there hasn’t been much research on the relationship between A1AD and behavior.

Re: I asked him if my son could possibly have Asperger’s and he said that he could diagnose him with that because that diagnosis is being taken out of the medical books.

It has not been taken out of medical books, it simply has a new name (i.e., “High-Functioning Autism,” which is the same thing as Aspergers).

Re: He ended up diagnosing him with Adjustment Disorder- nonspecific and said he was developmentally and environmentally delayed. 

Again, this wouldn’t be inconsistent with HFA. Unfortunately, you may have to wait until he is a bit older to get an accurate diagnosis. In the meantime, you can do your own detective work.

1. To start with, you'll want to narrow your focus to one particular behavior to analyze and change. Although it's tempting, don't just choose the thing that most annoys you. A better choice will be something that particularly puzzles you. For example:
  • Why can your son eat his lunch just fine some days, and balks on other days?
  • Why does he insist on punishment even when it upsets him?
  • Why does he get so wound up and wild?
  • Why is your son sweet and compliant sometimes, then resists to the point of tantrum over something inconsequential?

As long as you're going to be a detective, you might as well give yourself a good mystery. While you're stalking one behavior, you may need to let others slide, unless it's a matter of safety. Don't try to change everything all at once.

2. Next, keep a journal (or if it is a frequently occurring behavior, keep a chart) for noting every incidence of the targeted behavior. Include the time of day the behavior occurred, and what happened before, during, and after. Think of what might have happened directly before the behavior, and also earlier in the day. Think, too, of what happened directly after the behavior, and whether it offered your son any reward (even negative attention can be rewarding if the alternative is no attention at all). Ask yourself the following questions. Does the behavior tend to:

·  be more frequent during a certain time of day?
·  occur after a certain event?
·  occur during transitions?
·  occur in anticipation of something happening?
·  occur when routine is disrupted?
·  occur when something happens - or doesn't happen?
·  occur when things are very noisy or very busy?

Keep track over the course of a few weeks and look for patterns.

3. It may seem as though your son saves his worst behavior for public places, where it causes you the most embarrassment. But there may be a reason for that. Ask yourself the following question:
  • Does he have a hard time resisting touching and banging things like buttons or doors?
  • Does he have trouble in places where he needs to stay still and quiet (e.g., church)?
  • Does he resist places where children may be cruel (e.g., playground)?
  • Does he panic in places that are busy and noisy (e.g., the store)?
  • Does he shy away from places with strong smells or bright lights?
  • Is there something about any particular place that might be distressing?

Notice reactions to different environments and add these insights to your journal or chart.

4. You can stubbornly insist that your son is responsible for his own behavior, but you're liable to be waiting a long time for the behavior changes you want to see. While you may find some behaviors annoying, disruptive, or inappropriate, it may be filling a need for your son. And even if your son is genuinely unhappy about the negative consequences of his behavior, he may not understand it enough to control it.

In the end, it is far easier for YOU to change (e.g., your expectations, actions, reactions, responses, etc.) than for your son to change. You will need to do some detective work to determine the support your son needs to improve his behavior, and provide it. Ultimately, you can teach your son to do this for himself. But you have to lead the way.

5. Take the data from your journal or chart (e.g., patterns you've discovered, observations on environments, etc.) and see if you can figure out what's behind the behavior. For example:
  • Maybe he balks at lunchtime when he sees too many food items on the plate.
  • Maybe he begs for punishment because going to “time-out” feels safer than dealing with a challenging situation.
  • Maybe he explodes over something inconsequential because he's used up all his patience weathering frustrations earlier in the day.
  • Maybe he gets wound up because “being good” gets him no attention.

Once you have a working theory, make some changes in your son's environment to make it easier for him to behave. For example:
  • Give your son lots of attention when he's being good - and none at all for bad behavior (other than just a quick and emotionless timeout).
  • Instead of being happy that your son seems to be handling frustrating situations, provide support earlier in the day so that his patience will hold out longer.
  • Recognize situations your son feels challenged by - and offer an alternative between compliance and disobedience.

You may not always guess right the first time, and not every change you try will work. Effective parents will have a big bag of tricks they can keep digging into until they find the one that works that day, that hour, that minute. But analyzing behavior and strategizing solutions will help you feel more in control of your family, and your son will feel safer and more secure. This alone often cuts down on a lot of behavioral problems.

The Aspergers Comprehensive Handbook


COMMENTS:

•    Anonymous said… A person with higher functioning autism can make eye contact and interest to some extent. That does not rule it out. My 13 year just got his diagnosis last year because of people saying stuff like that. Yes, he made eye contact with certain people under certain circumstances. Yes, he could answer questions about himself. Yes, he wanted friends, thought he had friends. Did he actually have friends? Nope. Can he have an actual back and forth conversation about something that is not video games? Nope. Would it ever occur to him to ask about what happens in someone's life while apart from him? Nope. It is a spectrum and no one can say that just because your son made eye contact or answered questions that he isn't on it.
•    Anonymous said… Absolutely Nicky Logan. My son's Aspergers (ASD his psychiatrist has relabelled) a late diagnosis. A lot of people including the medical practitioners misunderstand autism especially about eyecontact. People with Aspergers/ASD like my son gives eye con...
•    Anonymous said… Asperger has been consumed within the Autism Spectrum Disorder in the newest edition of the DSM. Asperger has not gone anywhere- they have simply reorganized that section. I think sometimes we spend too much time trying to settle on a particular diagnosis. Keep in mind, these diagnoses are really just a definition. Most kids don't fit neatly into any diagnostic box. I wonder if we should just treat what is in front of us and not worry so much about the label?
•    Anonymous said… Don't worry so much about the diagnosis as about getting the appropriate early interventions. He needs OT to address any sensory or regulation issues-muscle tone-motor skills, psychologist to work on identifying and expressing emotions-coping skills-social skills, and speech/language therapist to work with pragmatic/reciprocal communication. Structure his days to reduce anxiety. Read what you can on meltdowns and how to de-escalate. Engage in self care and find a solid treatment team. As a psychologist, I work with children that are on the spectrum frequently and it is so difficult to watch developmental Windows close because of lack of access to services. Don't give up!!!
•    Anonymous said… Hmmmm my son has aspergers diagnosed and we have alpha 1 in our family.....very interesting. They also believe there is a link between gut health and autism....that aside, i would keep persisting if you know there is something as a parent, there is something
•    Anonymous said… I had a similar issue, my son was not diagnosed until he was 11, because he made eye contact and was very advanced verbally. And a diagnosis WAS really important for us, we got him medication and the right therapy. He's a whole new kid. Many of his behaviors have almost disappeared. See if you can get Autism services without a diagnosis. ABA therapy is a wonderful tool for kids with Autism. Don't give up, if you know something is wrong. As his parent you know more about your child. Maybe get a second opinion from an Autism specialist.
•    Anonymous said… I would add to the advice given to find a daycare or sitter that has experience with children on the autism spectrum. Do not allow the sitter to spank him and punish him all day long. He needs people who are willing to learn what he needs and try to work with him rather than pigheadedly beating a round peg into a square hole.
•    Anonymous said… Make sure u have some1 very patient & understanding caring for him when ur not there! Im shocked they won't diagnosis aspergers as my son was diagnosed with this 4 years ago! Don't give up! There's lots of people u can turn to for help & advice x
•    Anonymous said… My grandson is still waiting to be properly diagnosed ,here in NEWZEALAND they are so slow he was first seen at 2 but still waiting for the correct diagnoses and he is 8 .I fully understand the glassy eye bit almost to the point of evil its very scary ,but theses type of children prefer to be alone and god help you if you interupt sounds like asperges to me with the high function autism but he will be great when hes older its just that I believe that these children live in a totally different worrl to us that cll ourselves normal .At times I wonder if its the child that is normal and we the adult dont function right .Hang in there.
•    Anonymous said… My son is asd and makes eye contact with people and was still diagnosed
•    Anonymous said… Please consider trying a salicylate- and amine-free diet, also colours, flavours and glutamate-free. My ASD kid had behavioural issues similar to this as a toddler. I spotted an article in the paper about this diet, asked my gp and she said don't bother. But I figured it can't hurt to try for a couple of weeks. The day after starting my son calmed down significantly and life for everyone improved dramatically. If your child is already lacking enzymes in his gut this could be worth trying. The following website has all the information you need.
•    Anonymous said… Please take him to a child neurologist. They can also diagnose ASD and High Functioning Autism (Aspergers). Write down and record things you think are off to take with you. I barely had to fight for a diagnosis. My son has eye contact most of the time but still has HFA. The diagnosis is SO important to get your son the services he needs. Early intervention is key!
•    Anonymous said… Second opinion third opinion whatever it takes. Find psychologist that specializes in autism spectrum disorders. ..just don't give up. Took 4 years to get the diagnosis that I knew was correct.
•    Anonymous said… Sometimes it takes a long time to get a diagnosis, my son was diagnosed aged 10 even though I knew there were differences/frustrations from around 6 months. He was referred by everyone he came into contact with health visitors, two nursery schools, school and his doctor. But for the longest time the specialists just said challenging behaviour and not to give into him. The diagnosis when it came was high functioning autism but it was mentioned to me about PDA but some practitioners don't recognise this, but it certainly fits my son well. Hope you find someone who will help you getting to the truth. Remember parents know their children better than anyone else. Keep going xx
•    Anonymous said… Would get another opinion, insome children with autism aspergers etc. (Think there lumping it all under Autism Spectrum Disorder ,but its a spectrum so can be any were on it from low to middle to high and a whole lot more inbetween them).....They can actually have some eye contact and interaction with others deepending on the situation and the person just like they can show some empathy also etc..... sometimes some of these doctors have there preconsept ideas of just what autism should look like when infact its alot broader .......

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1 comment:

Peter said...

Thanks for a very interesting article.

My main, and possibly sole, point of contention is the adult assumption that our children should comply with our instructions, simply on the basis that we're their parents (or teachers). Since different adults have different concepts of right and wrong, it stands to reason that there's no absolute definition of correct behaviour.

Without any absolute to be guided by, it behoves us to allow children space to explore their own parameters rather than having everything laid out for them. This then opens up the possibility of empowering children through spoken observations and questions to develop a deeper understanding of their relationship with and their impact on other people they come into contact with, including other children.

Manipulating their behaviour through punishment, reward, or sanctions and bribes of one kind or another, serves to undermine their personal and social development. What gets left behind is a compliant person - or a rebel - who is lost when confronted with new situations which can't be matched with stereotypes learnt in childhood.

This person, constantly checking for approval, experiences loss of creativity and imagination in close relationships and in work situations. He or she is likely to be as flexible or inflexible as the upbringing s/he experienced, without being able to account for inconsistencies noticed by observers, defending poor decisions and resisting self-realisation and personal development throughout life.

It's almost too easy - although not easy at all in the long-term - to opt for behaviour modification to suit the moment, the mood or the currently held philosophy of child-rearing. Empowerment produces deep long-term rewards and satisfaction for all concerned, but the rewards are the intangible outcome of generous trust, both in the child and in oneself as a parent.

Having made these observations, I recognise that the number of physical, mental and emotional syndromes and their unprecedented proliferation in recent times, can complicate the process of raising children into adults responsible for their own attitudes and behaviour. But they can also lead us into reaching out for an expert, when the only problem is that were presented with a child-rearing experience we don't know how to handle, and we've lost the support of a community with ready access to people with natural understanding and wisdom.

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