Changes in the DSM: Effects on Child's Identity?

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katiebardsley
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13 Nov 2012, 11:25 pm

Hello! I am wondering if there is anyone who would be willing to comment on whether or not you think the DSM will affect your child's identity if they are currently diagnosed with Aspergers. I'm interested in how it will affect your child with Aspergers of any age. If you could list the age of your child when you answer back that would be great! Thank you!



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13 Nov 2012, 11:28 pm

If you believe that a person's identity is solely dependent on a single diagnosis, then yes.

But if you're a person who is open-minded and tolerant enough to see that a diagnosis does not change who a person is, then no.

I mean, it isn't as if an AS diagnosis means you have to fill out a whole, new birth certificate for your child, complete with a new name and everything, now is it?


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14 Nov 2012, 12:24 am

DS is 6, was dx when he was 3, almost 4. Since it was known at that time that the Aspergers term would not be used when the DSM 5 came out, neither I nor the professionals involved with DS have ever really used the term Aspergers that much. I personally think that the hair splitting between AS and HFA is a waste of time. Every child is so unique I dont see how you can definitively put one label vs the other on a child. So I guess to answer your question for us, no I dont think the change will effect us. I also dont think that just bevause the medicos have decided to stop applying a term to newly dx patients, that the term will stop being used by the majority of non-medical people.



ASDMommyASDKid
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14 Nov 2012, 5:14 am

My son is 7, and it won't bother him either. He was diagnosed as Autistic but scored very highly on the Aspie scale on the testing. His speech therapist refers to him as having Asperger's, to give you an idea. Other than his adaptive issues, and the severity of his social issues, he really otherwise has a strength/weakness profile that is more Apie than HFA. (So I do not know if you want to include us or not) When I need to use the terms I use the one that applies most to a given situation based on how he is acting. Sometimes Aspie is a better short cut, if I do not want to get into a big explanation, and sometimes Autistic is. The spectrum really is complicated.

I didn't get too hung up on the actual label because like Bombaloo, we knew at that time of diagnosis that the Aspie label was going bye-bye anyway. When I deal with his school I use Autistic, because that he is how he is labeled, but always mention that this trait or that is Aspie-like. We have books on both, and I use neither term to describe his issues to him.

We talk about his individual strengths and weaknesses. He doesn't notice how different he is, because his social skills are that weak. When it is time to explain it, it will probably depend on the printing date of whatever book I use to explain it. If it is book for Asperger's (Say, the All Cats Have Asperger's book) then I'll use the term Asperger's and tell him at the time it is part of autism.

Labels do not mean much to me, and so they do not mean much to him, if that makes sense.



MomofThree1975
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14 Nov 2012, 1:30 pm

ASDMommyASDKid wrote:
My son is 7, and it won't bother him either. He was diagnosed as Autistic but scored very highly on the Aspie scale on the testing. His speech therapist refers to him as having Asperger's, to give you an idea. Other than his adaptive issues, and the severity of his social issues, he really otherwise has a strength/weakness profile that is more Apie than HFA. (So I do not know if you want to include us or not) When I need to use the terms I use the one that applies most to a given situation based on how he is acting. Sometimes Aspie is a better short cut, if I do not want to get into a big explanation, and sometimes Autistic is. The spectrum really is complicated.

I didn't get too hung up on the actual label because like Bombaloo, we knew at that time of diagnosis that the Aspie label was going bye-bye anyway. When I deal with his school I use Autistic, because that he is how he is labeled, but always mention that this trait or that is Aspie-like. We have books on both, and I use neither term to describe his issues to him.

We talk about his individual strengths and weaknesses. He doesn't notice how different he is, because his social skills are that weak. When it is time to explain it, it will probably depend on the printing date of whatever book I use to explain it. If it is book for Asperger's (Say, the All Cats Have Asperger's book) then I'll use the term Asperger's and tell him at the time it is part of autism.

Labels do not mean much to me, and so they do not mean much to him, if that makes sense.


Sorry for my mini-hijacking of this thread but I was curious about something that you said. Are their traits that are more "Autistic" and traits that are "Aspie"? I always thought that Aspie were Autistic without the language delay. Eventually all these will go away, so in the grand scheme it doesn't matter, but your statements caught my attention and I just wanted to understand more about what you are saying.



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14 Nov 2012, 2:37 pm

MomofThree1975,

Supposedly, they have different weakness/strength profiles. It is not all material that shows up in the DSM, but the various questionnaires ask about those issues. So they do use these other more specific things to give a diagnosis. Otherwise the questionnaire would be just the points in the DSM.

I don't say I buy into it, as I think there is more complexity to this, but I have run into it in the different books and articles I have read. That is why some of the materials I read about Aspies applies more to my son than the material for Auties. With regard to communicating to others, the stereotypes don't fit often times and I have to decide what language I use depending on what my point is, and what stereotypes the listener is apt to have.

They typically will depict Auties as being more right-brained--more spacial, not clumsy etc. better at art etc., but worse at adaptive skills, pottying issues etc. They are supposed to be more severely affected, and are usually diagnosed earlier for that reason. They tend to label Auties as less smart than Aspies, but will give you an HFA designation when that particular stereotype does not work.

Aspies are depicted as more left brained, better at math, language etc. (except pragmatics) and more clumsy, better at adaptive skills, and with a higher minimum IQ. They are supposedly less affected and tend to get diagnosed later, for that reason.

When my son first got diagnosed he did very "well" on the Aspie part of the tests. He was not delayed in language so much as it was atypical development. (they didn't focus on his echolalia, but that is another issue) His fine motor skills are lacking, he has more left brained thinking patterns and aptitudes and he is clumsy. He has the "stereotypical "little Professor" attributes. But he also has Autie issues with self-help skills and his social skills were very very very low etc. too.

So, given the stereotypes (most of which are not in the DSM) I consider my son to be a mix. His formal diagnosis is Autism b/c of severity of social skill issues, self help skills, and b/c the doctor decided that pragmatics count as a language delay. I don't think so b/c Aspies by definition have pragmatic issues, but it wasn't worth fussing about trying to get a designation that is destined for oblivion.

The new DSM will yank out the IQ issues, and then grade on severity. I don't know what drama the DSM V will create, but I still do not think they know what they are doing. Autism is an umbrella term that includes kids with obviously some similarities, but who are still very different. They are barely into the genetic models, and there is no telling how many different causes, influences, genetics, epigenetics etc are involved. So they had to make things more fluid. (The other issues about who will qualify, under the new standards is complex and better suited for another thread)



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14 Nov 2012, 2:45 pm

Here is a link with some of the info (so you have it from a real source)

http://www.autism-society.org/about-aut ... -syndrome/

Also I think the age gap tends to be larger with Auties, so an Autie may have an emotional age 50% his age and an Aspie say may be closer to 66%. Some of that may account for the difficulty in diagnosis because the bigger the gap, the earlier one is apt to be diagnosed, and also the more one would be to get an HFA diagnosis as opposed to Asperger's.

It also explains "growing out" of a diagnosis because of natural but slow maturity. The child is still Autistic/Aspie, he/she just may have grown out of problems inquired about on some of the questionnaire questions. They decide the child is more functional, and they re-diagnose, accordingly.



Last edited by ASDMommyASDKid on 14 Nov 2012, 5:58 pm, edited 1 time in total.

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14 Nov 2012, 4:07 pm

You know what, I really think it might, mainly because of the public perception of the words.

When the average NT hears the word "Aspergers" he'll probably think something along the lines of someone like Bill Gates.

When they hear "Autistic" they think it means ret*d.



zette
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14 Nov 2012, 8:44 pm

My DS7 identifies himself as an "Asperger Kid" probably because we read a book called "I'm an Asperger Kid" when he asked us if he had Aspergers. I don't see him switching to declare he's an "Autism Kid".



MomofThree1975
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15 Nov 2012, 12:11 pm

Thanks ASDMommyASDKid. I guess my son has traits of both. I think it's probably more common to find people with traits of both. It makes sense why they would get rid of the distinction.



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16 Nov 2012, 5:48 pm

I was dx'd with AS in m 40s and it had absolutely no effect on my identity whatsoever, and the changing of the textbook won't effect it either.

When I was young I had severe allergies and my identity was all about being "sickly and fragile" because of how my mother overplayed it all. I saw myself as sickly and fragile and if someone had told me that respiratory problems and allergies were going to be taken out of all medical dx's then I probably would have been scared to death that the big bad world was going to somehow "get me". My entire self image was built around being so "sick" all the time, and being "shy".

I'd say that if everything is built around the AS dx and everything is geared towared it, then that can effect you.


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DW_a_mom
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17 Nov 2012, 3:38 am

Wreck-Gar wrote:
You know what, I really think it might, mainly because of the public perception of the words.

When the average NT hears the word "Aspergers" he'll probably think something along the lines of someone like Bill Gates.

When they hear "Autistic" they think it means ret*d.


Yes, I'm not worried about my child's perception of himself, but I am worried about how others will perceive if they hear the term.

In light of the expected transition I've taken to saying "he is on the spectrum" as my favored description. It doesn't give very much away.


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