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Can someone talk to me about Aspergers?


Celia
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Hi all, I'm hoping I can get a bit of insight here from moms in the know about this.

 

A friend of mine who's husband was recently diagnosed with aspergers has been telling me that she suspects my eldest son (age 6) is as well. I'm not sure if this is the case (you know how when you first learn about something, it seems to be all around you all of a sudden), although it might explain a few things.

 

I took my son to our family doctor yesterday for an unrelated issue, and brought it up with him. He's referred us to a specialist for evaluation, though it will take some time to get in.

 

I have of course googled some and do see some of the symptoms, which I had previously written off as just my son being his little unique self. Some of the common symptoms really don't fit him though, and I suppose this is where I'm looking for some guidance. For example, most sites mention children having a singular interest that they become 'experts' at. That's not him.

 

Also, he is my eldest child, so I'm not entirely sure of what is normal for his age! Although, when I see him around other kids, I can say without a doubt that he seems to fit in better with kids who are about a year, or even two years, younger than him.

 

He does seem to have some issues in social situations. He did fine in preschool (though it took him longer than normal to adjust to it), but come time for kindergarten, he didn't want to go (which is why we began hs'ing). He likes being around other kids, and does fine in things like swimming lessons and afternoon week long summer camps, generally making a few friends along the way. Although too sensitive and eager to please other kids, he generally gets along fine with others one on one. I wonder if this in itself would suggest that he's not aspergers?

 

With adults, he gets on fine as well, but he's off in his own little world sometimes. It takes patience to listen to him as he seems to struggle to get his ideas across, and he's not often on the same topic and some of the things he comes out with are kind of bizarre.

 

One other thing that makes me wonder if he could possibly have aspergers is his speech delay. From the bit I've read, this isn't normally the case in children with aspergers. He does have a few formal oddities in his speech, one of the neighbours has nicknamed him 'little Shakespeare'. He also doesn't get figures of speech (I have to explain them to him).

 

As an infant and toddler, he was a very difficult child. Extremely colicky. Slow to gain weight. A very poor sleeper.Sensitive to his environment to the extent that when he finally did fall asleep in the car after hours of screaming, a change in the texture of the pavement would wake him. He does pretty well now though, and I guess I've pretty much assumed up till this point that part of the reason he's behind is because of a few years of sleep deprivation. I suspected part of his problems as an infant might have been an undiagnosed milk allergy that he grew out of, as he began to do a lot better at around age 3.5.

 

So am I running down the wrong road with this? Does aspergers seem like a possiblity here, or is my little boy simply a child with a couple of delays that he'll grow out of? And even if it is aspergers, is a diagnosis helpful? Any recommended reading I should be doing here?

 

Sorry for the length here, and thanks for any advice you can give!

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Hi -- I have a 14-year-old daughter and a husband who are Aspies. What you describe sounds within the realm of possibility, enough so that I'd say have him evaluated. The thing is that the checklist of behaviors and symptoms for autism spectrum disorders are kind of like a bag of possibilities, and each kid is going to have a somewhat different combination, with different emphases, areas where they are definitely affected and others where they are not so much. For instance, my husband has more executive function problems (organization, etc.) than my daughter; she is more affected by sensory problems (actually she's outgrowing most of those) and visual-spatial challenges. My daughter doesn't have a single narrow interest either; she does quite well one-on-one; but if you see her in the context of a group of kids her own age, her differences are quite striking.

 

People have varying ideas about the value of a diagnosis; but one huge issue is financial. With insurance regulations changing so that Asperger's now falls, medically speaking, under the autism label, you may be able to get coverage for evaluations and therapies that previously were not covered. Many (but of course not all) Aspies benefit enormously from different combinations of speech therapy, social skills teaching, OT and vision therapy. Some need accommodations for upper level schoolwork, such as more time, or taking tests in a quiet room, or having a note-taker. A diagnosis or even a thorough evaluation pinpointing neurological strengths and weaknesses will smooth the path towards all these different things.

 

Also, undiagnosed kids who do have Asperger's are often at enormous risk for depression in adolescence and later in life. Many books by adult Aspies talk about the tremendous relief they experienced when they were finally diagnosed and understood that they were not at fault, that their brain wiring was simply different, and their behavior stemmed from that. They can decide who to tell about their Aspieness, learn how to ask for help, and -- speaking as the spouse of someone who went undiagnosed until our daughter was evaluated -- they can make the lives of their eventual boyfriends/girlfriends and partner so much easier if both people know about the Asperger's and can discuss issues it brings up in a relationship. I know this is looking a really long way into the future and this isn't even an issue with you now, with good reason... but I'm giving the long view here.

 

I wouldn't worry about doing too much reading right now. I'd go for an evaluation first and see what comes out of it. There are a lot of mild neurological syndromes, brain wiring differences and glitches, that bear much resemblance to each other and a good evaluation can sort them out and make recommendations for you. The one book that might be useful is called Quirky Kids; it's an easy read, not formal or diagnostic, but a discussion of all aspects of quirkiness, when they become problematic, and what to do about it. I've since found other books that are more specific as to my daughter's issues, but Quirky Kids remains a favorite.

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I would take a look at a few other things before settling on Asperger's. Auditory processing disorder is one, sensory processing (or integration) disorder is another. And dyslexia is another.

 

The social deficits are key in an Asperger's diagnosis. If he doesn't have the social deficits, then I wouldn't accept an Asperger's diagnosis, though there are lots of professionals who will be happy to give it to you anyway.

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[quote

Also, undiagnosed kids who do have Asperger's are often at enormous risk for depression in adolescence and later in life. Many books by adult Aspies talk about the tremendous relief they experienced when they were finally diagnosed and understood that they were not at fault, that their brain wiring was simply different, and their behavior stemmed from that. They can decide who to tell about their Aspieness, learn how to ask for help, and -- speaking as the spouse of someone who went undiagnosed until our daughter was evaluated -- they can make the lives of their eventual boyfriends/girlfriends and partner so much easier if both people know about the Asperger's and can discuss issues it brings up in a relationship. I know this is looking a really long way into the future and this isn't even an issue with you now, with good reason... but I'm giving the long view here.

 

I wouldn't worry about doing too much reading right now. I'd go for an

evaluation first and see what comes out of it. There are a lot of mild neurological syndromes, brain wiring differences and glitches, that bear much resemblance to each other and a good evaluation can sort them out and make recommendations for you. The one book that might be useful is called Quirky Kids; it's an easy read, not formal or diagnostic, but a discussion of all aspects of quirkiness, when they become problematic, and what to do about it. I've since found other books that are more specific as to my daughter's issues, but Quirky Kids remains a favorite.

 

I myself am in the process of getting my son evaluated. I have been concerned (and disturbed) over many things I have observed in my son.

Some of it I wouldn't have maybe noticed or considered as symptoms...unless I had read about it first. Like unusual "toys" and odd attachments. Example: My son chose a sound card from an old computer to occupy himself on a four hour car trip...and it did occupy him. He also "collects" old batteries. He likes to carry them around...even to church.

I guess what I'm saying is, if your child is a little quirky...no need to seek an immediate diagnosis but I do think the "Quirky Kids" book is a really useful for learning about the behaviors and symptoms of many areas under the "quirky umbrella"...not just Asperger's. If you ultimately decide to seek an evaluation, having read this book (and observed your child) would help you better communicate what your concerns are. There are tremendous benefits to early diagnosis and intervention, such as training in social situations, semantic-pragmatic language, sensory integration, etc.

 

Geo

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The fact that your son was slow to gain and colicky as an infant tells me that he has a gluten intolerance and possibly celiac disease. Especially with the spectrum issues he is having now. If he has a milk sensitivity, then he likely didn't outgrow it, but rather, his body adjusted, grew, and the symptoms began emerging in other ways (sensory, etc.). The same thing happens with a gluten intolerance.

 

My 3 daughters on the spectrum are all gluten intolerant. Two of them are also casein sensitive and one of them is soy sensitive. We tested through Great Plains Labs http://www.greatplainslaboratory.com . Let me know if you have any questions about this.

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I work professionally with this population and other special needs, so I’m pretty familiar with the subject. Everyone one with Asperger’s is different. There can be too kids diagnosed with Asperger’s and they can be complete opposites. I’ve seen some kids extremely social and wanting to be with kids whereas others preferred being alone. I would caution you from putting too much stock into what someone says unless they are a professional. For those working with these kids and adults, by seeing them interact, we can usually develop a hunch. However, without formal testing it’s difficult to know for sure.

Someone else here mentioned that those with undiagnosed Asperger’s have a high depression rate. It’s not just the diagnosed—it’s those with the diagnosis too.

This is what I see most commonly: sensory issues (noise or smells bother them, tags in clothing, rough textures, will only eat certain textures of food), easily frustrated, special interests in one or more topics—loves to talk about it, unaware of subtle social cues, literal, either disorganized or overly organized.

As for getting a formal diagnosis—the purpose is usually to obtain services from the school or county.

What’s most important—is what your child’s needs are and how you can help him.

I have some informal screening tools that I could email you. Let me know if you need more information.

Here are the three main deficit areas:

1. Central coherence- ability to focus on the whole and part at the same time. People with Asperger’s tend to focus more on details sometimes to the exclusion of the “whole.†These kids often miss subtle cues in social situations.

2. Executive functioning –These are tasks that an executive would do. So those with Asperger’s are lacking skills in working memory, cognitive flexibility, prioritizing, multi-tasking, planning, self-regulation, etc.

3. Theory of mind- inability to recognize that other people have thoughts and feelings that are different to one's own. Inability to guess what people’s intentions or motives might be. Some call it mindblindedness. One of the main difficulties I see if that they have difficulty distinguishing whether someone's actions are intentional or accidental.

Here is the official DSM criteria

Diagnostic Criteria for 299.80 Asperger's Disorder

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:

(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

(B) failure to develop peer relationships appropriate to developmental level

© a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)

(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(B) apparently inflexible adherence to specific, nonfunctional routines or rituals

© stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)

(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

 

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

 

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

 

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."

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Be careful with the diagnosis. It tends to be thrown around too much (IMHO). We just went through a year of wondering about our ds 6 . I am a speech pathologist and in my gut did not feel that he met the criteria. So, my mommy hunch led me to continue to question the diagnosis we had received from a well respected pediatrician. None of the therapists (OT,psych,etc) seemed to agree with the diagnosis either. So, a year later after a full psych and lots of $$ we have learned that he is extremely gifted with ADHD. He just does not fit the "core characteristics" of asperger's in that he is extremely social and able to maintain topic, have meaningful relationships, make eye contact in conversation, etc.

I am saying all of this to help you trust your own gut about your child. You don't want your mommy glasses to fog the view. But, you do want to trust what you know about your child. If you have some close friends that you \trust to give you outside "Views" on your child that may help. Just make sure it is someone you trust who will be honest and make sure you are ready for honest feedback regarding your child.

We later learned that the "respected pediatrician" that we saw (and paid out of pocket) is fast to give that diagnosis because he is looking for it. Like when you take your car to the mechanic...they will find a problem most of the time.

There is a book Misdiagnosis and Dual Diagnosis by Webb, Amend, and others that may really help you look at the differential diagnosis between many developmental issues. I highly recommend it. I would also really look at the DSM-IV criteria. He either fits it or he doesn't . Don't try to put a round peg in a square hole. Be VERY careful who does your evaluation. Make sure they are WELL trained in all of the "possible" issues that you feel you are looking at. If I can help you not make the same mistakes we did, I would love to be of assistance. Good Luck. Remember, he is still your sweet boy no matter what the "diagnosis" is. So, relax and enjoy your time with him. I wish I had not become so concerned with his "diagnosis". Not to say you shouldn't move forward. Just don't let it

take over!!

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That’s an excellent point. I remember one doctor was diagnosing a lot of kids with bipolar also, which those of us working with the children didn’t see at all. I called him, asked more about his background---and it was all about bipolar!

People do see what they want to see.

Remember you are the expert on your child. Many professionals can give you their opinion, but it is up to be fully informed so you can either reject it or agree it, or some combination of both.

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