I am constantly approached by others who want to put me in touch with a friend, a neighbour, a colleague who knows someone who has just got a diagnosis of autism.
I think everyone who doesn’t really understand autism thinks it is just one diagnosis, one condition. The expression comes to mind ‘when you have met one child with autism, you have met one child with autism’. Every child is different and every diagnosis is different and therein lies a huge problem for us all.
Yes, there are some aspects that your child or any child may share but no one has the exact same list of differences or difficulties. Your child may be deemed ‘high functioning’ but what does that mean? That they have spoken language they are able to use? That they have a high IQ level? That they can manage their behaviour while out in public? ‘Low functioning’ has an awful sound to it, a child may be labelled in this way because they can’t talk and have challenging behaviours but who are we to really know how functioning they are? Not having language will automatically bring an IQ score right down low but their non verbal intelligence may be very high. So let’s dispense with these titles.
Asperger’s syndrome is no longer a separate diagnosis which does make it harder for those of us whose children have what was previously known as classic autism. I am forever explaining to people that my boys were diagnosed when they were non verbal and had no language and we didn’t know if they would ever learn to talk. To me, it seems like a totally different diagnosis to Asperger’s where a child has normal acquistion of language but the two are both now combined to be known as ASD – autistic spectrum disorder.
That’s the problem – spectrum, it’s a huge one and meant to cover a huge range of abilities and differences. So when I am asked to speak to a parent whose 15 year old has just been diagnosed, I say no, I can’t help, I know nothing of a child with a late diagnosis which will usually mean a diagnosis of what was known as Asperger’s . Send me a parent with a non verbal 3 year old who stims and I am your woman, I can help or at least direct them towards help.
There are also children with serious medical problems which accompany their autism, mainly epilepsy which affects around 1 in every 5 of the children with more severe autism but also gut issues which also affect an unknown number of children. In these children, medical intervention to heal their stomachs can sometimes reduce the severity of their autism.
Then there seem to be other sub categories such as whether a child has learning difficulties which a high number do have. Is this in addition to their autism or because of it? Does anyone actually know? You can then add a number of co existing conditions into the melting pot such as ADHD, dyspraxia, hypomobility.
Which means that a diagnosis of autism means what precisely? I hope one day that autism may be sub categorized in the way that say visual problems are. A child may be blind or may have a squint or may just require glasses, we can understand what the child’s needs may be according to these labels but we can’t begin to understand what a child’s needs are by just the one word Autism.
My four boys all have a similar ‘type’ of autism if categories existed, they all started with a diagnosis at a young age when they were non verbal and had no eye contact ie severe classic autism but none of them have additional learning difficulties and all of them have learned to talk plus they are all very social. But they are all different from each other and have very different issues despite their similarities.