Autism

I felt it appropriate that my first blog entry is about the A-word. It’s the reason I decided to start blogging, and the thing that’s at the forefront of my mind every day.

Autism.

It’s a small word but means a lot. Word of the year for our family, I’d say.

We’ve known for a long time that Antony is different. Physically he hit all his milestones, but his language and social skills were always delayed or non-existent. As a toddler, eye contact was rare. He’s a little whirlwind — I’m pretty sure that he learnt to run before walking. He has an affinity for numbers and sequences in general.

Antony is 4. He started nursery in January of this year. We’d already deferred his start for a term because we didn’t feel he was ready for school. His language skills were still very basic, he wasn’t potty trained, he struggles to concentrate. We met with his nursery teachers, and they agreed it’d be best to wait as the January class was going to be a lot smaller.

A week into his time at nursery, we heard those dreaded words: “Can we have a quick talk about Antony?”. I think we knew what was coming, we’d discussed it a few times. “I’ve had a few children in my class who are on the autistic spectrum, and I think Antony is too.”

I think his teacher was worried we’d go into denial. We didn’t; we’re pretty pragmatic people, and our only concern is that Antony be able to learn. You see, we think he’s quite clever. He has an incredible memory, and is an amazing problem solver. They referred us to the Autism Pathway, and that’s a journey we’ve been on ever since.

Antony still hasn’t received his diagnosis. He started school proper this year. School, for their part, have been great. They’re giving him one-to-one support even though they don’t have funding allocated yet. They’ve set him up with a visual timetable and adapted their routine to minimise change. They’re getting specialist support in to educate his key personnel.

He’s seen a paediatrician and speech and language therapy has started. Best case is that we get a diagnosis in April next year. It’s a long process, and we’ve come to learn that the NHS gets an overwhelming number of referrals. We were told that we’re lucky his referral came before he turned 5; there’s a two-year waiting list for older kids.

So. We don’t know if Antony is autistic. We sort of know that he is, in that he struggles with communication, in that he does not play with the other kids in his class*, in that he has meltdowns when his routine changes, in that he repeats learnt phrases rote. I know that “autistic” is just a label. I know that nothing changes if and when he gets his diagnosis. But it would dispel those nagging doubts: Is he just a bit delayed? Is he just being naughty when he refuses to eat his tea? Should we discipline him more? Are all kids like this?

My hope is that this blog will help us connect with other parents who’ve been through this. Even if nobody reads it, we can hope for a little catharsis on those… challenging days.

 

* He does love to give cuddles to the other kids. He gets excited to see them and knows all their names. He just doesn’t actively play with them or talk with them.

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