Very High ADOS scores - in shock

[szxmum]

I feel like I am different from a lot (not all) of people on this forum in that I am working backwards from the shock of a diagnosis and everything falling apart rather than working towards a diagnosis. I am struggling trying to make sense of it all

 

I was reading my ds Ed Psych report last night and there was a whole page devoted to his ADOS. Now I'd skimmed over this part previously as I didn't have a clue what it was on about so last night I decided to investigate further.

 

I'm in shock, I am horrified at how high the scores are - they are way over the cut off points for Autism nevermind Aspergers Syndrome. I understand that he has been given a diasgnosis of Aspergers Syndrome because there was no delay in language or cognitive development. I guess what I am struggling with is the fact that you often hear Aspergers described as "mild" autism. This is emphasised on the ADOS with the cut-off point for Aspergers being lower than for Autism.

 

I think we have also been guilty of thinking it's only "mild" because he has "coped" for so long. However, there is nothing mild in his long list of difficulties / abnormalities listed under Communication, Reciprocal Social Interaction and Stereotyped Behaviours and Restricted Interests.

 

How could we NOT have known?

 

Denial - I don't think so

Lack of knowledge and understanding about what we were experiencing - definitely

Familiarity - ds is an "extreme" version of my dh, my brother and my dad, no flags went up that we had a problem - definitely

 

There - I've answered my own question.

 

It looks like we have a long road ahead of us. I feel like I'm in denial now though - I keep thinking, it can't be as bad as that but that's an awfully long list that I'm looking at

 

[frogslegs]

I don't have an answer but it looks like you need a lot of these <'> <'> <'> <'> .

Mel

[Flora]

The use of the word 'mild' in describing where AS is on the autistic spectrum is extremely misleading and causes all sorts of problems and misunderstandings.

 

I haven't got time to type much just now, but my son also scored very high on the ADOS test.

 

There's a difference between high functioning and 'mild', used more in relation to cognitive ability than anything to do with autism. ie, children lower down the spectrum (more classic autism) tend to have learning difficulties and language disorders to a greater degree than those with AS, hence the differentiation and use of the word 'mild'. However, this has no bearing on how an individual is affected by the triad of impairments related to all ASD's.

 

Sorry such a brief reply, it's Friday night!

 

Flo' xx

[Guest featherways]

Also, you can have 'mild' autism and 'mild' Asperger syndrome. Same is true for 'medium' and indeed 'severe'. Only diagnostic difference is the age at which we first spoke. And for classic Kanner autism, a low IQ.

People think it's mild because they can't see it, I think.

 

[bid]

I had very high scores on my Adult Asperger Assessment. It was explained to me at my diagnostic assessment that because I am very intelligent I have been able to model my behaviour and work out coping strategies, but that doesn't affect my fundemental level of autism, if that makes sense.

 

It has also got easier as I've got older. I now have a few very good friends, who accept me unconditionally and really care about me...so I trust them and listen to them about social/work situations. Often I don't understand why people behave in a certain way, or why I need to act in a certain way, but I listen to my friends' explanations even if I don't necessarily understand.

 

It does take time to get used to a child's dx...lots of conflicting emotions, so be gentle on yourselves <'>

 

Bid

Edited June 19, 2009 by bid

[Enid]

I recently watched a dvd of my children taken when DS was 4 to 6 years old, I was amazed, as he was so obviously on the spectrum, low monotone voice, no eye contact, quirky etc etc How HOW could I not have noticed. Enid

[Sally44]

I also did not see my son had autism because he is like other members on both sides of the family. I, along with my mother have sensory issues, and I along with my older brother have Central Auditory Processing Disorder.

And I spent along time keeping notes of behaviours that I thought proved he wasn't autistic only to read them 12 months later and see autism staring me back in the face.

Whilst my son was in the process of being assessed I went to a seminar by Olga Bogdashina, and there it finally made sense to me where my son was on the spectrum.

Then I felt guilty about the time I had wasted not pushing for answers. I did take my son to my local GP age 3 because he was repeating TV and DVD dialogue. He was also having social interaction problems at nursery along with what I now know were sensory issues. Again I was re-assured and fobbed off. He was finally diagnosed some 3.5 years later after school raised concerns 6 months after starting reception year.

But at some point you do have to let go of the past. It is water under the bridge. No amount of thinking about it will change it at all. What is important now is the present and the future.

And I agree with bid, that when the child/adult is intelligent that does mask their difficulties to a greater degree and their 'autism' or 'aspergers' can easily be seen as being eccentric, or exaggerated family traits. When my son was being assessed all the professionals kept saying how well he had done by working out and using coping strategies.

Don't be hard on yourself. Read the reports, but don't judge yourself or other family members because you didn't see it earlier. Unfortunately none of our children came with a manual. That would have been really useful!