What Henry's Autism is Like
My knowledge and experience with children who have autism do not go beyond Henry on a personal level, and a class of 9 or so beautiful students who are older and attend an autism unit attached to a mainstream primary that I only volunteer at one day a week.
Trust me, us autism Mums do not exactly organise play dates! This is a shame in a way since I remember needing those Mums and babes get-togethers and toddler playdates so much with my other two children. They keep you sane and connected and informed and supported. And that is SO what autism Mums need but, for very obvious reasons playdates and get-togethers just don't work.
I wouldn't want to go with Henry even if there was one (he would get nothing out of it and us Mums would all be so pre-occupied managing behaviours and keeping both eyes on them we'd barely get to take a sip of coffee let alone chat). If we did chat, what exactly would we say? We are neuro-typical remember so, find it just as awkward as anyone else and we'd end up saying things like '...so does your child just have autism then? ...or...so, how bad is he/she?...or...but he/she seems so sociable?..." Aarrgh, all the things we hate other people saying to us, we honestly would end up saying to each other, I guarantee it.
So, things like this blog, our social media @autismthreads and our website products (Oooh err) start to become SO important then (well, in my mind anyway). We have to tell our stories not only to feel connected and supported by other families like ours who we do not get to meet but, to help others learn so that they can then understand and only then will they accept.
Whilst I'm on this train of thought we will need tolerance from others also because the truth is, some autistic behaviours just do look and come across as unacceptable and weird and naughty even, even though they are NONE of these, I feel we are asking a lot from people who do not know anything about autism and even if they do I am convinced that some of them still go away muttering things like "...surely he/she can be taught to sit at a table? or ...even though he/she is autistic that was still a bit rude/naughty...or ...did you see how much time he/she spent on the ipad?.." etc.
You will never really know it unless you live it. I am going to end up saying this until I am blue in the face, and that's fine with me, autism is not visually recognisable so we have to tell people or provide visual cues so that a polite and informative conversation can follow, even if it's standing in a queue at the ATM. And even if there is no conversation, that visual cue will help set expectations, stop judgemental looks and help others to learn, even if they only clock just the one word autism, we've all got google, maybe one in ten will actually go and look it up, or even better, ask.
I will say, with gritted teeth that yes, perhaps it is easier for someone like me with Henry who has proper/classic/severe whatever autism to start conversations and tell others that he has autism because it takes a mere split second nowadays for people to notice that my gorgeous 7 yr old is not exactly a full box of smarties but, I I really feel the high functioning/Aspergers children and adults suffer so much stress and anxiety and exhaustion keeping up with their peers and mainstream society that they too should not be afraid to tell others.
I personally think we should all respect, celebrate and be in awe of those who have high functioning autism/Aspergers for their superior intelligence and unique academic talents but, if they don't tell us they have autism, how will we learn to tolerate and/or look beyond their social difficulties. I sense I could be opening up a can of worms here so, perhaps more on this in another blog, another time, and I will have to lace it with good humour too.
Right, the other can of worms (on a roll here) is the many, many messages out there on autism social media sites that each and every person who has autism is different and unique so, don't put them all in the same pot basically and assume they all do the same weird things and or have the same dislikes etc. Well, it's not rocket science to say that all humans are unique and different so, I don't understand why this keeps being emphasised so much. All different and unique humans also have similarities especially socially, as do those who have autism so, by sharing what Henry is like, perhaps others can relate and be able to recognise it in other people they may meet who have autism also.
A reminder that all those who have autism will have difficulty with social communication, social imagination and social interaction. I believe, almost all will also have sensory issues of some kind too. I can only say what Henry is like and I can only guess at the reasons for some of his behaviours because he doesn't really communicate. I have become The Gesture and Weird Noises Whisperer! So, as an example of a very autistic ("classic autism" doesn't quite do it for me) and largely non-verbal 7 year old...
- beautiful. His autism gives him, and others I believe, a kind of ethereal quality to their looks and if this boy looks you in the eyes it's as if he can see right into your soul.
- a happy, quietly confident boy with a sunny disposition. That's his personality.
- highly intuitive to my every mood, facial expression, body language and movement and in microscopic detail I believe.
- ultra-sensitive to environmental noises (open and closed windows and doors everywhere he is; lights switched on and off everywhere he goes; running water noises wherever he is; most loud machine noises although he can be so loud himself and not know how to quieten down?!; temperature changes by even 0.00001of a degree, certain types of touch...and probably a thousand others I haven't realised yet).
- has a wonderful sense of humour, it's hard to explain but, it's true.
- happy to be touched, cuddled and hugged (briefly because he never sits still for more than a few seconds really) and loves rough and tumble play with his siblings.
- very, very strong and flexible (probably hypermobile but hey, one diagnosis is enough, for now) in both legs and arms and has an insanely high pain threshold.
- accepting of his fate, usually.
- blissfully unaware that he has autism. I cannot even begin to contemplate how this is introduced or told to children whose parents feel they need to know or who ask themselves.
- on a higher plane than his earthling family members, absolutely.
- a hand flapper and a rocker, called stimming although, Henry does not do this when he is anxious and stressed but rather when he is super happy, excited and meant to be falling asleep.
- a terrible sleeper....arrgh, the sleep deprivation for me, is the hardest thing of all (much more on this in another blog).
- a strange and weird noises maker, a kind of communication in a way? Or a drowning out of other background noises affecting him that we don't even notice.
- an excellent visual problem solver. A talent I believe, whoop, whoop.
- a wonderful mimic, can copy whole pop songs but never on demand, and can swear in a perfect South African accent ah-hem!
- a fast runner and physically well co-ordinated to a point - his brain meanwhile is doing whole other things that can make him directionless and oblivious to things and people in his line of sight. So no bicycle riding for this chap just yet, no way!
- able to follow simply worded instructions (only since the age of around 5).
- able to tell us he needs the toilet (at age 6). He puts it as a question "Do you need the toilet?" meaning 'I need the toilet and I cannot believe you don't know and haven't asked'!
- able to tell us when he is sad (struggles to bring himself out of these emotions, can take up to 40mins sometimes)
- affectionate and will say "I love you so hard" - best day ever when I heard this.
- a constant grazer when it comes to eating and loves food but it must be plain even when it comes to sandwiches eg tuna on the side and then bread, not tuna on bread in a sandwich! And if there are 5 lollies in the box, then all 5 can be eaten...no stop switch and no understanding that they are a treat and will therefore not stop asking, even after you have said no more than a hundred times. Lollies need to be sold in singles, please!
- super good at entertaining himself, very happy in his own company and happy, happy, happy at home. Always moving and tootling around inspecting things in his own quirky and unusual way, loves the ipad (kids youtube), jumping on the mini trampoline, swimming, humming, eating snacks, 'playing' with all sorts of things in the house on his own.
- extremely suspicious of being set up for social communication and interaction and will go to great and very clever and subtle lengths to avoid it. So, no role-playing or games playing or even reading a book together (unless I repeat the lines he likes best fifty times).
HENRY IS NOT:
- a good sleeper...did I mention that already...? The recent purchase of a red night light and a white noise speaker have made a big improvement although the jury is still out, will need to give it a while longer and see if there is continued consistency...
- a social talker, at all, and never ever will be.
- prone to tantrums or meltdowns, shew, but can get very upset, shortness of breath with anxiety, especially about change and when he doesn't know what to expect and this can take a long time to reassure him and bring back round. Distractions and bribes and explanations DO NOT WORK with autistic children.
- comfortable with new environments, can get very disorientated and upset.
- able to dress fully, yet...has made huge strides in this department (independence) lately and we are so excited and proud, he even managed to put on his socks twice this week. And all with almost no guidance, supervision or even prompting to keep him on task.
- able to brush teeth fully yet...huge strides made just this week (lid off and putting toothpaste onto the toothbrush, then water on the brush and into mouth and lid back on with almost no prompting).
- able to eat using utensils...can use a spoon and fork only but why, when fingers are easier and he doesn't get it at all so, will need prompting to use a utensil with every single mouthful.
- able to tell us how his day was.
- able to tell us what is wrong if he is upset or even where he hurts if its physical pain.
- able to answer questions.
- able to have a conversation or even answer yes or no.
- aware anyone is talking to him unless they say his name first.
- able to join us at the table for dinner.
- able to stop himself moving towards something he is visually interested in.
- able to cross a road.
- able to read or write although, knows the alphabet and can write letters, we have even seen him write the word 'blue' correct spelling and all but, one must understand that if the word blue is not written in a blue pen then it is no longer the word blue!!! Love a literal mind.
- hates noises, fingers in ears to cope, usually. Won't wear ear defenders or things like gloves because it's as if he no longer has ears or hands when these things are being worn.
I am sure I could list many, many more but perhaps it's time to take a breath and go away and absorb. I will blog about some of these (sensory, sleep, eating, expectations and change etc.) in more detail for sure.