When this blog started, A was for Anxiety, which dominated my life. As time went on, A also became for the suspected Asperger’s/Autism of my son too. Yesterday we were told that he’s officially getting a diagnosis of Autism Spectrum Condition. I wrote about that on my sewing blog. I wrote there so that I so that I could share it far and wide with people I knew. (I know that theory that being open about mental health issues is a Good Thing and I salute those that do it (such as the inspirational Fiona) but boy am I not ready to share these snotty tearstained outpourings of emotion with people I know yet. No where near ready). But I felt a little like I was betraying this blog, where I normally write about ASC related stuff.
So here, is the post I wrote, which I’m not reposting, cos I don’t want a trace to this blog from the other one (oh the duplicitous webs that we weave)…
Normally this is a sewing blog. Occasionally I write about knitting or cooking or my cack handed attempts at woodwork instead, cos it’s my blog and I get to choose what I write about (it’s never crochet though, I don’t do crochet). Just like you get to choose if you read it or not.
Today I choose to write about the phone call we just got, because I want to tell a lot of people without explaining the same things over and over again and it’s a bit long to fit in a facebook status.
The phone call was about my son, known here as The Boy (we’re all feeling our own ways towards how to parent in the shiny new age of everything being on the internet, not mentioning my kids names so they can’t be found by search engines is my current approach). The Boy will coincidentally, turn 10 years old tomorrow, double figures, a decade of parenting for us and all that malarky.
So, a nice man from the Autistic Spectrum Condition/Disorder Team (not sure which term they use, I prefer the former and will use ASC from hereon in) just rang to let us know that they have decided to give him an ASC diagnosis. And my immediate reaction was “Phew”. So here are some answers to a few questions I’m anticipating on encountering.
What is an Autistic Spectrum Condition?
In case you have been sitting under a rock recently, “Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them” (that’s from the National Autistic Society website and there’s loads more information there). Autistic people are often referred to as having a triad of impairments of difficulties with Social Communication, Social Interaction and Social Imagination.
Why not Asperger’s?
Because the rule book, otherwise known as DSM-V, has been redefined, so that there is technically no longer a diagnosis of Asperger’s Syndrome to give. Obviously that doesn’t mean that all those people who were diagnosed with Asperger’s Syndrome now don’t have it any more, just that they have now come under the umbrella term of Autistic Spectrum Condition. If you want to know more about this then here is probably a good place to start.
The ASC team say that the term Asperger’s is “more or less applicable” to people that they diagnose as being on the spectrum (as they only meet people age 5 and over, and anyone with a more severe form of autism is likely to be picked up before then). So if it helps you to think of him as having Asperger’s Syndrome, that’s probably a good place to start.
You poor thing
Err, no. See, The Boy is The Boy is The Boy and always will be despite what anyone says. He is no different today than he was yesterday. He is amazing and funny and infuriating and clever and loud and lovely and, well, not exactly average. He’s never been average. His brain is wired up a little differently. That’s been clear for a while, we just have a handle now on what sort of differently it’s wired. For somethings the way his brain works is a distinct advantage, and for other things it makes life trickier, but at the end of the day how his brain works is him and I wouldn’t want to change his brain because then he wouldn’t be him any more. So, no sympathy please, we (my husband, often referred to here as Long Suffering Husband or LSH and I) are happy about this diagnosis.
So why do you want a diagnosis then?
Good question, as I just said a diagnosis doesn’t change who he is. And there is no treatment for ASC, but then we don’t want a cure. What we want is understanding.
We, as parents, want to understand him better so that we can help him cope with the things he finds tricky and develop strategies that help him find them easier. And understanding him better also helps us not get so frustrated at times (and we do get frustrated at times).
And we want The World to understand him better, which at the moment mainly means school. His current school is pretty good actually and have put things in place to help him already, but we’re hoping a piece of paper with a diagnosis on it will help us get our concerns heard and addressed when we negotiate the whole choosing and starting a secondary school thingy (as opposed to being dismissed as neurotic parents).
And also, we want him to understand himself. The Boy very much likes to know how things work, and he is aware that he is not average, so we hope that understanding why he finds some things tricky will help him, we know that other people on the spectrum have found it helpful.
Why did you want to label him?
We don’t see it as a label, we see it as a signpost, a way to help others understand him. We aren’t going to be making him t shirts and badges announcing this to the world, we’ll tell people when we think it’s appropriate, when it’ll help. And when he’s older, he can choose if he wants to tell people or not.
But I’ve met The Boy and he didn’t seem Autistic to me…
Did he make eye contact with you? Some people on the spectrum find that very hard, some are the opposite and keep making eye contact even when it’s not appropriate. The Boy makes eye contact sometimes and at other times finds it hard to look at our faces. Eye contact on isn’t enough to diagnose someone with ASC.
Did he speak to you? Lots? Not all people on the spectrum find it hard to talk to others. If you’re reading this, you’re probably adult, so ask yourself, is it usual for someone of his age to speak to you quite as much as he did? On the topics that he did?
It is true that there is no blood test for being on the spectrum and it is to some extent a subjective opinion about whether someone meets the criteria or not. But this diagnosis was made by a team of ASC experts, at the request of our GP, and they have considered information from us as parents, from his teachers, from a paedatrician, from an educational psycologist and from a communication and interaction specialist, as well as meeting with both us and him. They have sifted the evidence, considered it as a group and feel they are “confident in this diagnosis” and have “no major reservations”.
So, you’re opinion isn’t going to change his diagnosis, but maybe his diagnosis could change your opinion of what it means for someone to be on the spectrum?
He’s very bright…
People often say this in relation to The Boy whenever the possibility of him being on the spectrum is discussed. Very lovely people who I’m sure mean well, however I’m never quite sure what their point is. Obviously, they mean he’s very bright, which I know. It’s often fairly obvious that he’s quite bright within 5 minutes of meeting him and, well, I’m his mum, so yes, I’m aware that he’s bright. Being bright doesn’t stop you being on the Autistic Specturm. Being bright doesn’t place you on the Autistic Spectrum. The two things are completely independent of each other. I sometimes think it’s meant as a sort of consolation prize, like, oh, so he may be on the Autistic Sepectrum but at least he’s bright. The thing is, the two things are so intrinsically part of him, that one isn’t a consolation to the other, they are just who he is. So, if you say this, I shan’t be offended, but don’t expect a reaction much more than “mmmm”, unless you can elucidate a little.
I want to find out more…
Read A Beginners Guide to Autism Spectrum Disorders by Paul G Taylor. It’s excellent, it’s short, it’s a quick read and it really helps you get your head around how people on the spectrum think. Or hear him talk briefly about what his book’s about here.
Same old same old really. Including the not so inspiring waiting around indeterminately for Virgin Care and the like whilst they do whatever it is they do whilst you’re on a waiting list (lose files?). Next up (hopefully) a look at his sensory issues (which is baffingly not included in an ASC assessment but is dealt with by a separate team) and we were also recommended today to consider having him assessed for ADHD (apparently a quicker process around here than the ASC assessment at least).
Apart from that, we will continue to look after both our kids as best we can, hoping that the number of times we get things right far outweighs those occasions that we get things wrong. And I will continue to make him weird and wonderful colourful “comfy”trousers because they help him cope a bit better. Like I said, same old same old, it’s just now we’ll have a piece of paper to help us along the way.