Two weeks ago Bear was assessed for autism.
He’s only three but – to me and probably my husband, Wolf – it felt like this was a looong time coming.
My sister was the first one in my immediate family to receive an autism diagnosis. A little while after that, I started to have suspicions about our eldest, Tyger. That was about three years ago, when Bear was a tiny baby (well, he was actually a smegging big baby with big, doughy arms and legs but he was, at least, a young baby).
Tyger was assessed and diagnosed but I waited until Bear’s two year check-up before mentioning my suspicions about him to a health visitor (there’s very little point bringing it up before then). Once she realised I wasn’t going to shut up about it she referred Bear for an assessment.
I think the wait from the referral to an appointment was about six months but that was pretty much just a booking in appointment and then we had a further wait of another 6-8 months before the actual assessment (unfortunately, these are incredibly low waiting times compared to many parts of the UK).
The assessment day came and I was anxious. I’ll admit it: I have come across too many doctors, health visitors, teachers, nursery workers and other professionals who are completely ignorant when it comes to autism.
I’m at the point where I expect professionals to miss things, to hold outdated views, to overlook a lot of behaviour and to discount anything I have to say on the subject. I was on edge.
The process for Bear was different than for Tyger; it’s not uncommon for the assessment to vary from one Local Authority to another. With Tyger we had several separate appointments. There was an initial assessment with a paediatrician, then an assessment with a speech and language therapist, a third assessment with a child psychologist and then a multi-disciplinary meeting where a decision was made with the input of his key worker at pre-school.
Bear’s assessment was similar but all the professionals were there together for one long (three hour) assessment and other children were also assessed at the same time. So, there were four children and two paediatricians (watching two kids each), a few speech and language therapists (SALTs) and a nursery nurse. The children were encouraged to play with the provided toys whilst being observed by the adults.
Our allocated paediatrician and SALT each had separate talks with me about Bear and I was ready. I was armed with three pages of bullet points all detailing autistic behaviours in Bear. I was prepared to talk and talk and to point out anything I noticed as and when Bear did it.
The paediatrician started talking to me and I was ready for any misinformation that bitch threw at me…
Except, she was really nice.
And on the ball.
She was extremely knowledgeable about autism and hugely observant.
I was taken aback…and so relieved.
She had already read my bullet points from when I’d left a copy at the initial appointment and referred to them throughout our conversation. She asked relevant questions and noticed things about Bear. She noticed his short attention span when playing with other people, his repetitive play, the fact he only responds to his name about 50% of the time, the way he looks at things and people using his peripheral vision, and she even commented on his clumsiness and way of running pointing to a possible looseness of his joints, which was something I’d wanted to bring up!
The SALT was equally impressive and seemed to have got the measure of Bear. She mentioned much of the same information as the paediatrician, plus the fact Bear makes certain letter substitutions in his speech.
Next the children were offered a snack, which Bear emphatically refused because he only eats certain dry food (I imagine that was largely the point of the snack, though: to show any food issues) and went to play outside where Bear demonstrated his tendency to get obsessed with one certain toy (a Little Tykes car in this instance).
At the end, Bear was weighed, measured and the paediatrician checked his joints.
I left feeling a little lighter.
Though, I was still anxious at the feedback meeting the following week.
What if it was all in my head somehow? Everyone always seemed so surprised whenever I mentioned the possibility of Bear being autistic so maybe I had invented it. Perhaps I was just a crap mum and was blaming my own failings on autism!
These were a few of the thoughts racing around my brain on the bus to the feedback appointment. In the waiting room, I wittered on to other parents there for the same reason until I was called through to be told…
Bear is autistic.
Of course he is! I never doubted it…*ahem*
The paediatrician and SALT were just as lovely as they had been at the assessment. They told me it probably came as no surprise to learn they, and the other professionals who had assessed Bear, agreed he was autistic.
And they very kindly told me the reason Bear generally copes pretty well with his autism at the moment and that other people don’t realise he’s autistic is largely down to the fact Wolf and I realised so early on and have tailored our parenting to help. They said they’d normally give out advice to try but I was already doing everything they’d suggest. That felt pretty smegging good.
(I do feel I should point out there’s also a good dose of luck involved – many autistic children have parents doing everything they can and still struggle massively day-to-day.)
They even – and, yes, I’m bragging now – told me they’d really like to make use of my knowledge and experience of autism and asked if it would be okay for them to contact me once Bear’s a little older about a place on the parent panel at the children’s development centre.
I replied enthusiastically (because flattery will get you everywhere) but only if they contacted me via email since phone calls are tantamount to torture for me.
I left the appointment armed with yet more paperwork (including a couple of pages aimed at doctors, dentists etc. about how to best care for autistic patients (something that’s sorely needed as my blog post about autism and pain shows), which they encouraged me to photocopy for any future dentist appointments, hospital visits etc.*).
I got on the bus to go home and I came pretty Goram close to crying tears of relief.
Two down…I guess my next mission is to get an assessment for myself.
Watch this space.
*If anyone is interested in the sheets I got for health care professionals, please let me know and I’ll do my best to figure out how to use our printer/scanner to email you a copy.