Getting an ASD diagnosis (or not): part 1

It’s over a year now since we were first advised to have our son, then just 3 years and 5 months, assessed for ASD or Autism Spectrum Disorder, and what a year it has been.  It has been thirteen months of highs and lows.  Of dragging our son from one appointment to another, building up hopes and having them come crashing down.  Of trying to explain to people why you’re doing this, explain why “the experts” think that, no, his behaviour may not be because he’s just a little boy but because of something more, something he can’t help.  A year of watching our son grow and develop as he now starts to prepare for school.

When we started this process I desperately tried to find out how long it would all take and what was involved, but information was sketchy at best, so I’m recording our journey here in case it helps someone else in this position.  It’s a long story so I’ll break it into a few posts.  I’ll post here again with links to the other part(s).

It was the 6th January 2011 that I first tried to explain to my health visitor that I’d felt for a long time that he had “sensory issues.”  I didn’t know much about it as a specific condition but instead, I’d come to realise that his behaviour was often tied in to occasions when his senses were over stimulated.  She didn’t fully hear what I was telling her but instead latched on to his fear of noises, and immediately wanted to refer him for an audiology assessment.  She felt that this explained why his speech wasn’t clear enough.  She’d been telling me this for months but I had always felt that his speech was affected by his large vocabulary – he wasn’t practising each word enough but his vocabulary was larger than average for his age.  Still, it was a start so we agreed to go for the assessment.

We had heard horror stories about appointments taking months and years so we weren’t holding our breaths for a speedy response, but we were wrong and he was seen before the end of January.  At the end of the appointment the audiologist confirmed that his hearing was perfectly normal, and agreed with me that his issue with noise was more psychological.

Whilst that might have been enough on its own to refer him on further, my son’s behaviour in the assessment was terrible and this was the straw that broke the camel’s back.  I could have wept for him, and I think I did on the way home.  He crawled under the examining bed to flick the switches.  He stood between me & the doctor and screamed for my attention.  He broke her medical equipment and tipped the tongue depresser lollipop sticks everywhere.  He climbed on top of her desk and sat on her paperwork.  The doctor had to lift him off because I was also dealing with my now upset 9 month old baby girl.  She was screaming, he was screaming and I was screaming inside.

His behaviour was socially inappropriate, she said. She felt that he needed to be referred for assessment for Asperger’s Syndrome, or something like it.  As a teacher, I’m aware of this condition and it wasn’t the first time I’d considered this as a possibility, along with something like dyspraxia, but I wasn’t sure if it was the best fit for him.  However, if someone thinks he should be checked, I’d be doing him a disservice to refuse.  She did, at least, acknowledge that I was using the correct strategies to handle him so that minimised the “I’m a terrible parent” feeling though it never goes away entirely.

After that, things moved really quickly, and we were genuinely impressed with the service provided.  A specialist health visitor came to visit us at home to spend time with our son and talk to us, but this time, she felt that he didn’t need to be assessed and didn’t feel it was appropriate to even put him on the waiting list for referral to the Community Autism Team (CAT).

This was seconded by the Educational Psychologist brought in by the nursery.  The psychologist said that he was very intelligent and had shown empathy in her presence, but that he tripped over his own shadow.  She said if she’d been asked to pick out the child with Asperger’s in the room, she wouldn’t have picked him, but she would have picked him out as the dyspraxic child.  It was fabulous to think that perhaps our son didn’t have a major impairment of his social communication skills.  Communicating with others, even just being around others, is how we fill our days.  Having these sorts of issues can be so limiting, particularly because they are “hidden.”

Almost immediately after that we had a triage assessment with the Speech and Language Therapists.  This time I was less impressed. A health worker played on the floor with my son whilst the therapist spoke with us, his parents.  She didn’t spend any time speaking to him herself – in fact, she had her back to him for almost the entire time.  Right at the end she saw his face screwed up as he tried to enunciate something and it was only then that she threw in the possibility that he may have verbal dyspraxia.  It felt like everything was coming together

Check back here over the next few days to see how things progressed once he reached the child development centre…

Getting an ASD diagnosis (or not): part 2