TOTS 100 - UK Parent Blogs

Monday, 28 October 2013

Autism (again)

This post was going to be called Living with a Diagnosis again as it's been the prevailing theme this last few weeks but after today I've returned to the Autism Again. Feeling very fed up and dejected today on the back of a positive few weeks. We have been seeing a Sleep Hygienist a few times to get some advice to help B sleep at night and in view of getting medication (hormones) to help him get to sleep if necessary. The sleep hygienist cannot prescribe the meds so we saw a doctor today. I thought it was going to be a quick appointment but it turned into one of my worst nightmares. Due to administrative error with the appointment time, I had to wait an hour. I was given the option of having another date in a few weeks time but opted to wait as it was crucial to get this problem sorted out once and for all. I did a good job of entertaining B in the waiting room.


We drew pictures together, read books, played with make believe cooking, made and flew paper aeroplanes. I was feeling quite smug at my ability to keep him occupied but was relieved when the doctor arrived. However within just a few moments in her office she immediately got on to the topic of autism and ASD (autistic spectrum disorder). Now B has had two different assessments about a year apart with both outcomes being that he does not meet the criteria for ASD. I'm happy with this. In my view and experience he does not seem autistic although he does have some autistic traits. This is even more notable considering his diagnosis of PMS. He has frequently been described by others as unique, an enigma, not fitting any box. This was because no-one knew what was wrong with him. He was abnormal and not typical but was not typical ASD either. So you can imagine how put out I was to cover this 'old ground'. It's not that I resent a diagnosis of ASD it's just that I don't believe it 'fits' B. The PMS is the prevelent syndrome. I don't want B 'lumped' into the autistic category without considering his other needs which are due to the PMS. By all means some children with autism have PMS but not ALL children with PMS have autism - does that make sense?.

The doctor could see I was getting upset and she kept changing the subject back to the sleep medication but then returning to the autism again! She just couldn't let it go. I tried explaining to her that lots of people think B has autism on first sight but once they get to know him it becomes obvious that he doesn't. He just shares some traits. She asked to give him another assessment (which would be his third ASD assessment) but I said no thank you for now. It's something we could consider down the road but for the time-being he had an assessment a few weeks ago and I don't think it's necessary for another one so soon. I left with B's medication prescription clutched in my hands but a sorry looking expression on my face.. The doctor seemed genuinely sorry to have brought the subject up again and I said I'm tired of hearing this repetition. I guess it's never going to be something we can truly put behind us. I appreciate that she is experienced and an expert in ASD but I am  an expert in my child and I think this is one of those occasions when mum knows best!

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