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Thursday, 28 April 2016

Emotional Rollercoaster of Autism diagnosis

I'm looking back again, to the early days of this blog, in the months after our girl was first diagnosed with autism spectrum disorder, aged 2 and a half. In fact, this post was written just over a year after we saw a paediatrician for the first time, and a lot had happened in that time even though back then it felt like everything was moving so slowly.

Steph's Two Girls
Sasha, aged 3 and a half, a year after diagnosis. Dressing up and face paints, two things she wouldn't generally enjoy these days.
We'd had to move Sasha out of the local private nursery (as they'd struggled to cope with her) and into the mainstream nursery attached to the primary school our eldest daughter was already at. It turned out to be a great move for Sasha, but I remember the worries over changing routine back at that stage. It could have gone either way. Luckily for us, the staff were accepting and understanding and offered all the support they could. It wasn't easy, for anybody, but it just about worked. As she moved into reception, we chose to send her to an autism specific pre-school called Tracks for a couple of sessions a week. Staff experienced in autism worked with her there and although it was a 40 mile round trip twice a day for me, it was one of the best things I've ever done for Sasha. 

In this post, I talk about the 'painful' statementing process - a Statement of Special Educational Needs was what a child needed in order to ensure the correct support. It's now called an EHCP (Education, Health and Care Plan), and I'll go into that in more detail in a future post. We had been turned down when first applying for one of these for Sasha - on the grounds of some information or other missing. Which presumably was a stalling process, as they had plenty of information, and could have just requested the extra anyway. So we only had to wait weeks, rather than the usual six months, to get Sasha's case looked at again and they then agreed to assess. Lots of meetings, lots of paperwork; nothing much has changed in the past six years on that front.

I also mention SALT - Speech and Language Therapy - and I've been left with the overriding feeling that this is an NHS service that could have done so much more for us, bearing in mind the difficulties with speech that Sasha had (and still has). Not sure what played the biggest part, lack of understanding or lack of resources, but either way it's not turned out all that well.

Finally, I consider the mix of emotions which goes on when you stop to think about the future if you have a child with autism. Hopefully we are all working together to make this world a better place, but of course there are still many hurdles to jump.

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School nursery is still going fantastically well for Sasha (am touching our wooden desk now!) and I really couldn't be happier about that. It was definitely the right move at the right time, even if it was one we hadn't originally planned. She is obviously happy and confident in her surroundings, and with the staff members - she comes out after lunch club most days with a huge grin on her face. She's then fairly happy and active at home, and hardly ever sleeps during the day now. Sleep used to be her opt-out method when she got particularly upset, so we're quite glad that doesn't happen so often. In fact she doesn't reach the same distressed state anywhere near as often these days.

So that's all great news, but that's not to say she's changed. She still has autism, her speech is still unclear (and as yet has still not been given any actual NHS SALT sessions, but won't go on about that right now!) and I think that starting the new nursery has really highlighted to me how far behind her peers she is with regard to learning some things, and with her social and emotional skills. When she was at the old nursery I guess I made a fairly conscious effort not to mix or get involved with many of the mums of her peers, as I already had a great circle of friends who are mums of Tamsin's peers, and Sasha was quite difficult to deal with, never allowing me time to chat anyway. I also knew that it was unlikely anyone from Sasha's nursery would go to her school, and that unless you meet a very good friend, your lives are then taken in different directions anyway and you have less chance to meet. However now I stand with all the other mums at the new nursery every day and watch all the other children coming out, and it is sometimes difficult to see the children chatter away or answer questions easily when I know Sasha just can't do that. Of course the sadness can't possible last as soon as I see Sasha's big grin - and of course it's not the other children making me sad, it's just the awareness of how big the gap is.

The statement process is inching along and we have submitted our final information/thoughts on what Sasha's needs will be for when she starts reception. Just now the mail has arrived, and in it a copy of the NHS SALT (Speech and Language Therapy) report which they were bound to provide for the LEA. They are suggesting Sasha should receive 10 sessions of 90 minutes duration across the year. This is to include observation, assessment, attending meetings, writing reports etc; the list goes on, 13 points in total of which 2 involve direct therapy with Sasha. Not really impressed to say the least - how bad does she have to be to actually get direct help?! The whole statement process is a tricky one though (not least getting to the point where they agree to assess in the first place). Finally getting to a stage where we all agree on what help Sasha needs in specific areas and what this translates to in terms of staff hours etc could take some time and a few headaches.

They do say you shouldn't really think about the future, as no-one knows what is going to happen. That is true for everyone, but lately it has been difficult not to think ahead, and I already know there will be much tougher times to come for us as a family. For now, Sasha is blissfully unaware of the differences, but how will we explain it all to her when she does begin to realise? It would be so sad if she lost her gorgeous sunny disposition and the independent character she has now. School can be a difficult place for any child, but particularly so for those who are different I imagine. Last week I was almost in tears during school assembly, when a young boy with some difficulties (slightly more obvious than Sasha's) went out to the front to be awarded a certificate along with other children his age. It was seeing all the heads of the children turn to watch him walk back to his place which brought a lump to my throat. Children don't generally hold back from saying what they feel, although hopefully at this young age it's not laced with malice. One of Sasha's extra chatty peers told me recently that Sasha ignores everyone, and to be fair he's mostly right, although at times she can be the most friendly and sociable child I know. It's just not always at the right times. It was tempting to say to the boy 'she can't help it' or 'she's not doing it on purpose', but of course it's not so easy to explain in a few words. She's just different. It's a shame that our society doesn't really welcome that as a whole about lots of various issues, not just autism. Awareness and understanding have definitely improved over the years though, and we just have to keep up that flow of information to be able to help everybody.


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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five





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