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Friday, 15 April 2016

Has Autism or Is Autistic?

Regular readers will now that our youngest girl was diagnosed with autism over six years ago, and that's when I first started my blog. As this month is autism awareness month, I'm revisiting the early days of my blog to look at the emotions we went through shortly after diagnosis. These posts were written just four weeks after we first saw a paediatrician; in the first we have just received the official diagnosis and in the second I am trying to give a basic idea of what autism is. 

Here's a picture of Sasha in June 2011, on her 4th birthday. A rare one where she is looking at the camera.
Can you tell from this photo that she is autistic?!
Having read my old posts over, I have to say that I definitely don't agree with some of these thoughts now. For example, today I would prefer to say that Sasha 'is autistic' rather than Sasha 'has autism'.

My views on that have changed due to the fact that I've processed a lot of information over those six years, including several blogs written by autistic people. And in the main, they prefer to be called autistic, as that is who they are. Of course they are also individuals, Sarah, James, Chloe, whoever, but they acknowledge the difference that they have. They (and I) don't feel like it should be seen as a disease; we generally say people 'have measles' or 'have cancer' but we don't say people 'have blindness'. It's just a difference.

Of course once Sasha is old enough to decide for herself how she would prefer to be described (I'm guessing that'll be as 'just Sasha') then we will of course follow that path. For now though, it makes more sense to me to say she 'is autistic'. That's not to say that I'm offended by 'has autism' or even that I don't use that myself on occasion - it might all depend on who I'm talking to and why I'm telling them. So please, don't be afraid to say either - I'd rather people said what feels comfortable to them than avoid the issue altogether. I also talked about 'mild' and 'severe' autism - of course knowing what I do now, I'd say that links into the high versus low-functioning debate. It's very difficult to categorise the effects on one particular person.

There's also much more recent research, and new links on the NAS website, to clarify that it is now thought that the ratio of boys to girls with autism may be quite different, due to the fact that girls are much better at 'masking' (meaning they generally learn how to copy others better so their autism is not so 'noticeable'). That's a whole other post!

 Anyway, onto the posts, as they were originally written:

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So today we went back to see the paediatrician, and after asking Mr C and I what we thought, she confirmed she would be giving Sasha a diagnosis of ASD - autism spectrum disorder. Although it's a spectrum, they don't actually state where on the spectrum a child is at such a young age, as there would still be so much to develop at this age anyhow. It seemed as though she had already decided on that after our last meeting, but was not wanting to rush in and hurt our feelings, which is fair of her. As she must have experience, there's no need for us to doubt her thoughts.

So although it's not a shock, and it doesn't change anything on a day-to-day basis, it is of course a bit sad for the poor wee soul. The next step is that her report gets sent off to the Autism Advisory service, who should then contact me in 4-6 weeks to offer some support - although what exactly that will be we're not so sure of!

From all I've read so far, this is really just the start of a fairly hard slog for me to get the right kind of help and support for Sasha. I've already heard about parents' evening and groups and even day courses to go on - all of which take up extra time of course. Then there's the minefield of so called 'intervention programmes', of which ABA seems to be a fairly new but recognised one - but also fairly expensive. And of course the speech therapy is the most important in my mind, I'm really hoping that can start as soon as possible. I almost cried this evening when she was sitting on my knee at bedtime and she hopefully said the same phrase to me 3 times, but I couldn't understand at all what she was wanting (nothing part of the usual routine, so maybe it was a roundabout request for sweeties!) and so that made her upset.

So it looks like time and money is what we need now to help our little darling. One thing I think we could benefit from is some parenting course to help us discover how best to treat Tamsin through all of this - I don't want her to start resenting Sasha in any way, but it's a bit much to expect her to understand everything going on at her age.

So good job I was sitting about twiddling my thumbs before all this news ;). Will just have to cram twice as much into our everyday lives now - anyone know of a good, cheap nanny??!!

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Just a quick one today, as it struck me that I haven't really said much about ASD/autism yet. We've read a couple of really good books and can't exactly summarise them in a paragraph here, but for those who know nothing (like me just 3 months ago) I can pass on some info as I understand it. 

First, we would generally say Sasha is diagnosed with ASD or has autism, rather than she is autistic. That's because saying she is autistic kind of implies that's all she is, whereas in reality she has autism, but that isn't the whole of her, she has many other skills and qualities. 

ASD is Autistic Spectrum Disorder - so called because the behaviours can range from mild to very severe - and I'm sure most people would understand it to be about the severe cases such as those that have been televised. Characteristics such as repetitive behaviour, lack of social awareness and the like can all be shown to varying degrees. 

The National Autistic Society (NAS) explains it as follows: 

Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction. 

In the 'olden' days, people assumed that autism was caused by parenting - so a lack of discipline for example would lead to bad behaviour. Nowadays thankfully a lot more research has been done, and this idea has been totally thrown out. Autism is complicated and down to the genetic make-up of a person, so you are in fact born with it. As per the NAS,

'Autism is a complex developmental disability involving a biological or organic defect in the functioning of the brain'. 

The statistics now say 1 in 100 children will have autism, and it is amazing how many friends of friends who have children with this diagnosis have now been mentioned to me. I'm sure I will make some great new friends who share some of the same daily challenges as me - but then everyone is different, in the same way that some of my old mum friends will not have had the same food battles with their children as me but may have had worse child sleep problems. 

There is no proven reason for the increase in diagnosed cases, although it follows that some of this is down to increased understanding of ASD as a condition. Two facts from the NAS, with links to their web page: 

Over half a million people have autism in the UKBoys are four times more likely to develop autism than girls. 

There are no cures for autism, it is not something that goes away as children grow up. 

There are various methods in practice, and developing all the time, to improve behaviour, but what works for one child may not for another. 

Again according to the NAS: 

'Autism is a lifelong developmental disability with no cure. Children with autism grow up to be adults with autism.' 

And there ends today's lesson. Just a quick intro, I'm sure I'll pass on more information in the future!

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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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