So in chasing up Jude’s autism assessment yesterday…yes the one I requested in November 2015…I have been told that I won’t hear from anyone until the new year of 2017. Honestly, I’m not joking. I wish this had all been done sooner because now the deadlines for school application has long gone and we were unable to even visit some of the settings I wanted to consider for Jude on the grounds that we couldn’t prove he is autistic. Very frustrating and possibly something primary schools should consider in the earlier years for children that are lacking any obvious diagnosis. Now whilst I have said before that labelling disability does nothing for bringing society together, it does mean access to provisions that you can’t gain without the relevant paperwork.
SO I thought I would help the council out and do an assessment myself based on the diagnosis criteria detailed on the National Autistic Society website (NAS)
Here we go…
Social Communication –
- Difficulty interpreting verbal and non-verbal language YEP
- May have a literal understanding of language YEP
- May find it difficult to use or understand facial expressions, tone of voice, jokes and sarcasm YEP
- Struggles with abstract concepts YEP
- Struggle to understand expectations YEP
- Echolalia – possibly Jude’s most irritating trait. This simply means repeating what has been said in conversation rather than answering appropriately. Here’s an example: I will say “how was school Jude?” Jude will reply “how was school Jude.” Honestly, I could scream sometimes. Actually, I do scream quite a lot.
Social Interaction
- Appears to be insensitive. YEP. You can bawl your eyes out in front of Jude and he’ll not have a clue what to do. In fact he’ll either walk away or just stand and stare at you.
- Seeks out time alone when there are people around and it’s all too much YEP
- Never seeks out comfort from others. Jude never seeks comfort which I always find sad. I don’t remember Jude needing a hug for a long time.
- Appears to behave strangely HA! I think this one is a yes.
- Hard to form friendships, wants to interact but unsure how to. YEP
Repetitive behaviours and routines – Jude shows repetitive behaviours in everything he does, even down to how he gets into bed. He can’t handle it if I park the car differently, if someone sits at his place at the table, he needs to have his bags in his hand before the bus gets here, he plays the same games over and over again. He also hates it if I drive a different route to wherever we are going.
Highly focused interests – Not so much with Jude this one but perhaps his global development delay prevents him from gaining such interests. He has always been massively interested in wheels and how they move but less so now. Lining things up?! Is that an interest? Or playing with bits of paper and blocks on his pillow?
Sensory sensitivity – Indeedy. As a baby and toddler, you couldn’t even touch the palms of Jude’s hands because they were so sensitive. To hold his hand you had to gradually widdle your fingers down from his wrist into his palm. He is less so now but still flinches if you touch his hands. He adores lights and spinning objects too and can stare at them for hours. Sounds as well, he likes his bubble tube left on at bedtime because it makes a humming sound and I think it soothes him.
SO based on all the titles given by NAS and that fact that Jude fits into literally everyone bar “highly focused interests,” I think it’s entirely appropriate to say Jude is autistic with a capital A. Do you think the council would take my analysis as a viable asset to his file!?
How long have you had to wait for assessments in your county? I’m hoping for everyone’s sake, they aren’t as slow as Hertfordshire.
A x
Great post. I think to waiting for assessments can take years everywhere. I know a few people waiting on some from different parts of the country. Let’s hope you get the answers you need so Jude can get the help he needs. Good luck xx
Oh honey, that’s a crazy amount of time to be waiting. The echolalia would drive me mad I think, it sounds very frustrating. I hope you get your appointment soon. Thanks for linking up to #SundayBest x
I like your blog, good read. My son is nearly three, and I’been banging doors since he was 15 month old. We waited nearly a year for speech therapy. Then his speech therapist was kind enough to write a referral for an assessment back in September and we’re being seen early January. But I kept calling them every 2 weeks to see how are we doing with the waiting list.
I know he’s young, but I believe the sooner the better. He’s severely speech delayed (bilingual though) loves wheels and IPad, has some sensory issues with slimy and sticky things. Limited foods, only a few type of toys, no imaginative play, echolalia, does not seem to understand emotions and other basic things like toilet training, not very interested in other children. Reads, counts, knows a lot of weird things (memorised). On the plus side: he’s loving and cuddly, wants attention, no tantrums at all, sleeps well, no routine attachment.
I know he’s borderline but he’s definitely different/late compared to he’s peers.
Ahh well done for persevering. You’re right in thinking that the earlier you can get provision sorted the better, it’s important to become known to the social care department. I hope it all goes well, let me know if I can help in any way. A x