What is autism? In mum speak…
I think most peoples burning desire on this one is to just get a straight/one sentence answer, ha ha. It sure would make things a whole lot easier eg ‘it’s a disease and there is no cure’ especially when your children ask you what it is but, the truth is autism is NOT a disease, there is NO cure and it cannot be answered in a simple sentence either.
Now, depending on the attention span of whoever it is you’re talking to, the most important thing to say is that children and adults who are autistic (or have autism) are just like you and me but they see the world very differently to the way you and I do (or their brains are just wired differently).
Autistics see all the incredible details of life in a very visual way and in more detail than we could ever imagine but, perhaps without seeing the bigger picture at times. They have things they will be good at (sometimes REALLY good at) and they will have things they struggle with too (most often social communication), just like you and I. They will also almost always have some or many sensory (noise, touch, smell, light, taste, hyper/hypo) things that can be very intense and even physically painful to them ie way, way more than we notice it. And finally, you may notice what seem like odd or unusual behaviours (little ticks or habits eg rocking, hand flapping) and that’s absolutely fine, they are safe, you are safe, and they are not strange or weird as most of these behaviours really help them to stay grounded/regulated and cope in our crazy world.
In slightly, and only very slightly more academic speak (I am no professional and not an academic), autism is a neurological spectrum disorder, ah-hem. It is also sometimes referred to as the 'Triad of Impairments’ these being1. social communication. 2. social imagination. 3. social interaction. Basically ‘spectrum’ means that all individuals who are autistic are different and once diagnosed fall under this umbrella/spectrum.
One end of this spectrum is used to describe high functioning autism (Aspergers) and the other end severe and profound autism but honestly, no-one ever puts a mark on a curve and says ok, your child is here ‘x’. I have no idea where my son is on the spectrum other than he is not high functioning but, nor is he profound, and I don’t really care either.
Autism…It is what it is. You won’t really know it unless you live it.
The problem for people I find though is that it helps them to know what to expect if you can tell them where they are at on this spectrum so, I have had things like “ So, where is he Trish? on a scale of say 1 to 10…?” I know it’s hard to pluck up the courage to ask and please, please DO ASK just preferably not like this ok. Ask the child/adult or parent/carer who is with them all the usual questions such as name, age, school/work (this will tell you so much about ‘where the child/adult’ is at), likes, dislikes etc. It will give them a chance to tell you WHO THEY ARE and (if they choose to do so) say that they are autistic/have autism. Try not to be offended or put-off if they do not respond appropriately, or take longer, or not at all nor, if they do not make any eye contact either, it’s all ok. If it doesn’t go well the first time, please don’t give up.
So who am I, this unprofessional non-academic woman? Well, I am wife to Paul, and mum to three children, the youngest being an adorable boy named Henry who is 8, loves trampolines, swimming, transport, drawing, building, KidsYouTube, and who is autistic and minimally verbal (a few years ago he was non-verbal, amazing how far he has come!)
Why am I writing this article? I started up an online business a year ago called ‘Autism Threads’ to raise awareness and support families like ours. There are over 700 000 people diagnosed with autism in the UK and including their families it comes to 2.8m people, all living their lives with autism.
We sell caption t-shirts, clothing and accessories (some autism specific, some generic/fashion products for everyone) all to: raise awareness; change peoples perceptions; inform others; support the wearer; be positive, and donate to autism charities. There are blogs much like this article to read and a monthly one page newsletter to sign up to also. You do not have to have any connection with autism to go on the website and choose say a fashion tee with a super cool slogan where an amount per tee sold goes directly to an autism charity that we have chosen.
I’ll never give up trying to change peoples perceptions of both autism and what parenting a child with autism is like. I am fearless (and often sleep deprived and caffeine fuelled, watch out) when it comes to protecting my son and people learning to accept him for who he is. I don’t want other mums to suffer the same type of judgement and looks and stares and comments I have done and that I am sadly beginning to get a very thick skin over (and a sharp tongue on a bad day too).
Autism is not visually recognisable and people are not just going to ask, our visual cues go a long way towards getting those all important conversations started and sharing how incredible, fascinating, pure, rewarding, joyful, loving and unconditional relationships with autism can be.
When my autistic son Henry looks into my eyes it’s as if he can see into my soul and is communicating a thousand unspoken words. We, his parents, and his siblings have all experienced a love for him and joy in the way he sees the world that goes way beyond anything we have ever known before.
Find out more about Autism Threads by clicking here