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My daughter's diagnosis confusion - Aspergers?

Ayshigirl

Sorry for long ramble. Last November my 13 year old daughter was assessed to see if she has ASD following years of struggling in many areas of her life. Having worked in special  needs education for a few years I felt she seemed to tick many of the ASD boxes and we suspected high functioning autism.  The diagnosis came back as complex/complicated: she is considered to have a Social Communication Disorder (along with difficulties with executive functioning, slow processing and some aspects of ADHD - but not an ADHD full diagnosis). We went back to the team to question some of their report - for example they did not consider her to have difficulties with transition, which to us she clearly does. Other professionals including her family support worker and psychologist had recognised this too. Some adjustments were made to her report, for example they did acknowledge difficulties managing transitions (but not transitions themselves- totally confusing! And they acknowledged sensory issues historically). They're awaiting our approval of the final report but we have some queries:

- she has considerable sensory issues (eg noise and smell sensitive, gets very claustrophobic) - more so historically with noise e.g she was terrified of road drills, hand dryers and helicopters when a toddler but is fine with them now. They have said this isn't significant though because it doesn't involve sensory seeking behaviour. I find that confusing, especially in relation to children I have worked with and training I've been on. We watched the Channel 4 documentary recently which echoed our understanding that sensory issues can be a feature of ASD.

- they haven't acknowledged her discomfort with making eye contact because she didn't display this when assessed. To us it is highly evident though and she's always  been this way. She can make eye contact but doesn't like to. (I'm the same and can find it painful which I know is another ASD trait)

- although she has many ASD traits they felt she doesn't demonstrate obsessive behaviours or interests (although we pointed out that she tends to watch the same film/TV series and read the same books over and over). This wasn't acknowledged in her report and this was the sticking point in her not receiving the ASD diagnosis. From others' experience, is it crucial to have this element? Does everyone with ASD/Aspergers have this?

We were informally told she would previously have been diagnosed as having Aspergers or PPD-NOS though the criteria and definitions have now changed. But the Channel 4 documentary featured a woman being told by an expert that she did have Aspergers. 

We'd really appreciate some advice about all this and where to turn now as we are more confused than ever.

  • Well I had no reply there at all. We are really desperate - she has meltdowns, violence - involving police visits and hospital admissions!

  • Thanks for all the helpful thoughts. I'm going to post this in the more general forum (excuse me if that's not normally done - I'm new here) as I'd like more thoughts on this and perhaps someone can point us towards the next step.

  • in reply to Ayshigirl

    The Aspergers diagnosis no longer appears as a separate entry in DSM V, but the collection of symptoms that would previously have been labeled Aspergers now falls under the umbrella of ASD, as does PDD-NOS (that is, the criteria are the same). Therefore, if your daughter would have been diagnosed with Aspergers or PDD-NOS before DSM-V, she should have been diagnosed with ASD under DSM-V. I think the person who assessed your daughter made a mistake.

    Also, the traits typically exhibited by females on the spectrum are somewhat different from males, in that the tendency for very narrow, limited interests is not so pronounced. That should not have been a reason to deny the diagnosis.

    If it is very important to you or when considering the support that would be given to your daughter as a result of an ASD diagnosis specifically, I would advise you to request a second opinion.

  • in reply to Blade

    Thanks Blade. I have read that some psychologists are still using the term aspergers. And your point about obsessiveness has  got me thinking. She is really obsessed with her pets (not that she ever cleans them out). Any suggestions about our next step please? 

  • in reply to turn left at albuquerque

    Thanks, that's interesting. I'd love to hear from others as we're quite lost at this point 

  • The expert was Simon Baron-Cohen. I questioned him last year, or the year before, on the DSMV changes to diagnosis. From what I gathered, he seemed very reluctant about them and not entirely happy. I may be off the mark with this interpretation, but I don't suspect I am having seen him diagnose Aspergers in the documentary the other day. Obviously regardless of the DSMV changes, he is entitled to use Aspergers as a description to categorise someone's specific presentation.

    Regarding obsessive interests, this is a sticking point that can often be misunderstood or misinterpreted. It may be something simple that you wouldn't assume to be an obsessive interest. For example, mine are music and computers, which are both easily enough considered vague and 'normal'. As a teenager, a specific band and Disney. Not so unusual for a teenager to be a fan of a band or to like Disney, so perhaps not easily noticed, but the level of obsession is an important consideration. And how long the obsession lasts. Time and intensity. 

  • Aspergers has been removed from DSM. This happened years ago in DSM 5. I was diagnosed few years after it was removed from DSM.
    my diagnosis says it this way
    Blar.. Blar DSM-V Blar...Blar That me is on the autism spectrum (Asperger Syndrome)

    http://www.autism.org.uk/about/diagnosis/criteria-changes.aspx

    PS Of couse it dosn't say me there but my name