Wednesday, 30 April 2014

Six months in... Autism not Autistic

We are nearly 6 months into our sons diagnosis with autism and I do feel we are still on the steep end of the learning wedge. I feel there is so much I don't yet know and there really is a lot of conflicting information out there and while I generally feel I can pick my way through it, what is becoming increasingly apparent is that while autism is a THING, it is not a thing firmly wedged in a box. Yes there is the triad of 'impairments' but there is a range within those too. So you have multiple spectrums within the spectrum. So this post is a bit of a collection  of the information we have gathered along the way as well as a record of how we're feeling and coping too.

We don't tell lots of people about his autism, mainly because the people who matter already know, but also because of the lack of understanding we have already encountered. Many people hear 'autism' and assume the person will be non-verbal, unable to make eye contact and hand-flap all day (stimming) but while these are certainly some characteristics on the spectrum, they are not every child.

We decided fairly early on that in terms of language, and the power we give the word autism in our lives, it wasn't going to dictate. Our son HAS autism. He ISN'T autistic. This is an important difference to us because it reminds us that his autism doesn't define him and though it is a part of him and part of what makes him the unique, wonderful and challenging person he is, it is not all he is.


Alongside the autism he has a pretty profound speech and language disorder primarily affecting his receptive language (what he can understand) and to a lesser extent his expressive language (which is improving largely due to the intensive therapy he receives). Early on he was diagnosed with verbal and oral dyspraxia which is a disorganisation in the messages between his brain and mouth/language centre, then a phonological disorder has subsequently been diagnosed and it is similar in that it means the person has difficulty organising speech sounds. He appears to stutter sometimes but its not a true stutter (so his SALT says anyway), just that his brain is thinking ahead and has to catch up, again its a disorganisation.

Sensory Processing

Before the autism came sensory processing disorder. I say before because his paediatrician says that autism better describes his range of difficulties, inclusive of the sensory issues. Sensory Processing however looms large in our minds all the time because it is how we make sense of the world and for him, well he doesn't have the luxury of making those automatic thought processes we do all day, every hour, every minute. He can cope reasonably well with noise. He can cope reasonably well with a light touch. He can cope reasonably well with a frantic activity happening in front of him (ie his brother jumping up and down, or the TV etc). What he can't cope with is all those things happening at once, its literally too much for his brain to make sense of at one time. We think of it like layers, too many layers of sensory input makes him anxious and frustrated and he generally responds by either becoming aggressive or withdrawn, though we are seeing more of the physical behaviour these days.


He is still in a mainstream school and has a fulltime Individual Needs Assistant (INA). He has a statement of educational needs from the local authority though the title of this will change later this year. Not that anyone has really told us much about it. We feel as though his needs are largely met in the school at the moment, mainly helped by the fact he goes to a special facility two mornings a week for SALT and his INA is brilliant. At the moment we feel very strongly that we don't want him to go to a mainstream comprehensive/secondary school and this is because while children at primary age are generally very inclusive and we have no issues with bullying etc, teenagers (bless them), often can't help themselves, its the hormones and my son doesn't have the capacity to understand this. He dances to his own tune and expects everyone to be nice and lovely and if I can try to protect him from this, I will. Also I don't have the confidence that he would be supported to be the person he can be, rather than held up as failing to achieve when measured against the national curriculum. Of course this is all early days and he is in year 1 at the moment so I'm open to the fact that it is a while away.

Well that's all for now, bit of a long one, thanks for reading if you made it this far :)