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.
