Getting an ASD Diagnosis (or not): part 2

I began recording our journey through the process of assessment for an ASD (or something like it) over a month ago but the time has never been right to continue it. I can’t finish it because we’re not at the end but we’re getting very close to the end of this stage.

A month or two after our speech and language triage appointment we made our first trip to the Southbank Centre in Glasgow. It’s a child development centre and houses lots of different specialists for many different childhood conditions in one place. There, our son was to do a series of standardised development checks and take his medical history – something I can now recite as well as I can recite “The Sair Finger“. He scored well for almost everything, particularly his language – no surprise there because he verbalises everything. The only area he scored below his age was his ability to care for himself – he finds cutlery and dressing himself a challenge, though he’s really coming on.

The registrar we saw didn’t feel he needed to see an Occupational Therapist – the one thing I was sure he did – and didn’t know if he needed an ASD referral either, but as a registrar she had to confer with her consultant. The next day she called to confirm he was now on the waiting list for both. To be honest, she hadn’t filled us with confidence.

And there we stagnated for months. Gone was the flurry of appointments, the sense of movement. Summer came and went and still not even any word from the speech therapists who had gave us an estimated waiting time of 6 months. We were so frustrated when this passed. I called to find out why, because I was worried I’d missed an opt-in letter. No – I hadn’t lost a letter (maybe just my mind), they had “lost” staff and the wait had been extended to around 10 months. Sometimes I feel like they hope to make you wait as long as possible in case your child grows out of it. This is great if they do but frustrating if your child does actually need support and won’t just grow out of it.

In the meantime, the educational psychologist was back in the nursery.  This time, she stopped me in the reception of the nursery where she told me she couldn’t talk to me because we needed an “emergency meeting about schools” and then proceeded to tell me (in front of passing parents) that she had no idea where the suggestion of dyspraxia came from, he clearly had Asperger’s, and that his bad behaviour was because we were giving him too many choices – when had she ever even spoken to us about our parenting strategies?!  She was quite confrontational about it all and I was too taken aback to make much response.  She decreed that we would need to wait on the results of his next appointment with the Southbank Centre, due within a month.

When we next rolled up at the centre we had a new consultant to speak to so we had the medical history to recap.  She didn’t feel there was any need to redo the same tests again but she did do some more.  She confirmed that he still had some issues with laterality and with his ability to make his hands do what hers were doing, and she made suggestions of strategies that could be employed by nursery/school.  At last!  The actual diagnosis my son does/doesn’t end up with is not particularly relevant – what we need are ways to help him cope best with school.

The “emergency meeting” with the psychologist failed to materialise but we did unexpectedly reach the top of the speech therapy list!


14 responses to “Getting an ASD Diagnosis (or not): part 2

  1. Pingback: Getting an ASD diagnosis (or not): part 1 | From Slummy to Yummy Mummy·

  2. I went through the process with my son and found it a real emotional roller coaster. I am just so sorry that insensitive ed psych spoke to you in front of other parents, and as far as I’m aware, she is not able to give the ‘final diagnosis’ so shouldn’t really have put it like that. If you ever want to chat to a Mummy that went through the process, I’m at the end of the phone x

    • Thank you. She really should have handled the situation differently. She was great at the start of the year so I wasn’t expecting that. The head teacher agreed with me, and thinks it stemmed from my son stealing her glasses.

      It’s great to know that I can speak to you about it if I need to. He’s part of a group ASD assessment next week so we’ll see how that goes. I’m still not sure that it’s the best fit for him, but I don’t know what is and these people are the experts so we’ll see what happens.

  3. The whole process sounds really frustrating. It’s great that you have finally been given some strategies for your nursery to use. The educational psychologist should certainly have talked to you in private.

    • It is incredibly frustrating. We now see an OT and she is fabulous – but pregnant and will be going on maternity leave in a month or so. He’s getting an ASD assessment next week. As for the psychologist, the head teacher tried to show us into her office but she was adamant that she wasn’t going to speak to me and that speaking to me in the reception didn’t constitute speaking with me.

  4. Wow I was enthralled reading this! My little girl has only just starting babbling and I hadn’t even thought of ‘what if she doesnt speak properly, how will I know, what will I do?’ etc etc. How did you notice there was something not right? Its an eye opener honestly.. thanks for writing this, its so informative! x

    • The saga does continue but far too boring to read in one go. We are getting to the end point of this stage though we get the feeling that they’ll tell us it’s inconclusive and nothing will really be decided till he’s about 7. As for how we noticed, as a primary school teacher I suppose I’m just a little more aware of the sorts of things to keep an eye on – though I can’t diagnose anything. I do think we get a gut feeling if something doesn’t feel quite right, and that’s what nurseries etc are there for. I’m sure your little girl will be absolutely brilliant though.

  5. Good luck with getting the help that your son needs, it is a long and frustrating journey. We began a very similar journey about 2yrs ago. My daughter has a SLI (Speech and Language Impairment) and her ST suggested she might have Dyspraxia or verbal Dyspraxia. We saw a pediatrician who said she would refer her to the OT for diagnosis and then we heard nothing further, eventually I took to phoning every week to see where her appointment was and this was we got seen a few days around her 5th birthday (she is 7 next week). The OT said she didn’t have Dyspraxia as her fine motor control is very good which was a relief and finally the ST diagnosed her as having a SLI. It’s been a long journey and very frustrating at times, but I’m glad to say that her speech and understanding has made a big improvement, especially as her ST has had long gaps between sessions. This all made me realise that you need to keep chasing up appointments for your child, otherwise there is a risk they fall through the gaps. With DD2 I used this knowledge and kept chasing up her ear appointments, especially as she was passed to and fro two different hospitals and within 6mths of her 1st hearing test, she has had grommits in her ears and her adenoids out to help her hearing and her speech.

    • It’s always so good to hear about other people in similar situations. I used to Google furiously for info on what the process was like and what to expect but didn’t find much because everyone and everywhere is so different. It sounds like you’ve had a fight on your hands but your daughters have benefitted from your perseverance. I’m glad they’re getting the support they need.

  6. So sorry to hear that you’ve been treated like this. You should not have heard about an aspergers diagnosis in front of other parents; its very insensitive. My son was also diagnosed in a development centre by a team of professionals after a protracted fight. Noone at school would listen and would often blame me so we went through our GP who referred us to the hospital who referred us to the development centre. It took ages but eventually when he was 9 he was diagnosed with an ASD which was a total shock as I was expecting dyxpraxia and ADHD. With my daughter, I started to see similar symptoms and pushed the school for a referral to the development centre instead of going the medical route. They were reluctant to do this but eventually we got a diagnosis of aspergers and auditory and visual processing problems. That was only last year but I have no regrets getting these diagnoses for my children as its helping us to fight for educational support for them. I hope you get the support you need.

  7. Pingback: ASD Assessment Feedback Today – I’m really nervous | From Slummy to Yummy Mummy·

  8. Pingback: Getting an ASD Diagnosis (or not): Part 3 | From Slummy to Yummy Mummy·

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