Is it too severe to say autism serves up a degree of daily dread on parents? Perhaps not. There’s certainly a never ending sense of uncertainty.
He can sway between extremes alarmingly swiftly; middle ground is rarely inhabited by Isaac. Hence our every day, every waking hour default is ‘on edge’. Always prepared for some heavy lifting.
Our nervousness will vary vastly in terms of intensity. Weekends and holidays, where a lack of routine can take Isaac hostage in horrible ways, could mean it’s heightened. A precisely prepared school day with plans aplenty and a sense of cautious calm could even kickstart the day – although my stoic wife may have to suppress post school potential fallout.
Very likely compounding the need to confirm the day’s itinerary, something will be mentally fidgeting him which he will attempt to articulate through his repetition or recollection of facts:
Like a train journey he recently did that stopped at an unannounced station: “daddy, why did the train stop at Basingtoke on the way to St. Ives on the national rail services? Why didn’t the driver say so? Because he did say the train stops at Reading and… (lists them all)?”
Maybe it’s his grandmother’s new journey to work. Something someone said at school. Events, dates, buses, trains.
My wife possesses a particular patience with connected tenacity to confidently locate his real worry about the day ahead: maybe he knows nothing’s on in the afternoon and that’s scary, perhaps he’s going somewhere there may be a dog (he hates and is scared and repelled by them and their, I imagine, erraticism: “dogs are rubbish…,” he’ll say, “they have to go away…stupid dogs”). Or is it a day when I might be home late from work (because I was on the same day last week). Whatever he’s recalling – however long ago – will mean he’s experiencing the same stress levels as if it’s happening there and then, in the moment. His mind can appear a minefield where treading carefully guarantees little in the way of protection from unexpected explosions.
Because at vulnerable times the inventory of knowledge and experience I’ve harnessed about Isaac emits mental tremors in me before I attempt to do pretty much anything. I can catastrophize to the point of crippling anxiety. Indeed I’m certainly not the first person to comment that parents behave in autistic ways so absorbed are they in their child’s autism and its attributes. And so keen are they for an antidote to the chaotic autism-unfriendly, spontaneous society we live in. It’s common sense damage limitation. But it can also be damaging. I know that.
A recent holiday triggered that survival tactic which then overstayed its welcome so suffocating was its nature. The first half of the holiday was as care free and conventional a holiday I believe we’ve had. With extended family nearby, we stayed in a cottage on a cute little farm; it was symmetrical, organised with well-behaved animals. Which family members visited us and when could be plotted and itemised by him. Every day the chickens and sheep and ducks, safe behind fences, could be fed with Farmer Tim at the same time. His previous blanket wariness of the animals became an accepted awareness. No feeding of course, and a demand that the animals ‘stay away please’ but it was an (somewhat edited) idyllic few days.
Making Isaac authentically happy (as opposed the faux happiness of transport talk or being boisterous) is hard to come by. When I offered an early return from the holiday he visibly loosened like a tight knot magically undoing itself. He played nicely with his sister, ate a sandwich and even went outside. But was that happiness or so-big-it’s-impossible-to-quantify relief?
A process of marginal losses happens. Isaac’s limited eating, limits further. His propensity to do anything lessens. We all follow a strict routine. Meltdowns aplenty. Ipads are a relief. Life contracts to very little when all these compromises are made.
And liberating us from this not so long ago were the objective Custodians of Isaac’s potential and welfare and hope. His therapists and teachers at his sanctuary, his school. Who eased us in from the autism waste ground we were scrabbling about in. They spoke of his timetables, how he’s loving laughing and socialising at school. Their pride in him. His hilarity, imagination. Mostly though, they implored us to own our lives. Leave him with grandparents. Indulge but know when not to. We innately know what he can and can’t do, when to or to not push him.
Importantly, the next time I’m caught in an autism rut, where I lose myself to its supposed traits, I’ll try to tell myself it’s too complex a condition for such, well, crass simplification.
We really can lighten his mood with a slightly more muscular approach. I barter with him – eat, play, see certain folk; and you can then tell me whatever fascinating encyclopaedic bit of travel trivia you absolutely have to tell me (like that there are three Streathams on the national rail services which he’ll list, before naming linking bus numbers and more.) We can dampen that daily dread – it’s possible on occasions.
But that doesn’t mean there’s a beauty and creativity and unpredictability to him too – and what he says that, maybe, just maybe, we can embrace and foster and ‘go with’. This was illustrated when my wife talked to him last week about where he came from. “My tummy” she said, as you would. “Why, did you eat me?” he asked back.
🙂Matt – I want to recommed a few websites that will give you additional support and insight. www.adiaryofamom.wordpress.com – is wonderful – mom of an autistic and a neurotypical daughter – supportive community and very insightful blog. Also, this site is a collection of blogs by autistic people of various ages on various subjects – their insight may help a lot in understanding how your son perceives the world – www.autistikids.com
Your son may be picking up on your fret, fear, confusion, which makes him more on edge – it’s a downward spiral. In the blogs I mention, you’ll find a lot of insight into how he’s processing the world from the AUTISTIC perspective, which may help a LOT to manage the stress all around. Your son may not be able to articulate how he perceives the world, but other autistic people are sharing their stories and they are there to help 🙂 I hope this helps you!
Thank you for sharing so much about your family. As a grandparent of a lovely boy ( age 12 .. diagnoseed at age three) who has similar traits as Isaac I have some understanding of your joys and your frustrations. Our experince is that there is help, assistance and lots of good people out there who make positive impacts on our lives…. Three steps forward and two backwards is a common experience but we do now get a few forward without any backwards! Autism is an amazing subject and has told me more about the human condition than anything else i have touched.
Keep going… & very best wishes.John
You write beautifully and I can relate to a lot of what you’re saying. Thanks
🙂I know her fingers and hands hurt her when writing and she is behind the other children, and she still cant dress herself after PE in school and that upsets her because shes not quick enough.
The nightmare of her using her hands to eat her food despite being coaxed to use her cutlery, and the mess all over her clothes in school and home, after eating .to the awful depression and self esteem is rock bottom on certain days, the hateful words she says when shes quarrelling in which she has to have the last word,
.From birth she was an irritable baby who hardly slept she seemed to be in pain, but the drs said she was fine, she was always sick up until age 4 when we put her on semi skimmed milk and the sickness stopped
She goes nuts over any change in her life and you cannot pacify her and its pitiful, you can see the distress in her face.
She cant bare any loud noise and panics. she gaggs with some food smells. she cannot say her L’s ,
The frustration we feel because we dont know how to help her.
We avoid telling her anything in advance as she gets into such a state and will repeat over and over are we going yet, or worry about it, so we are learning to help in ways, but not in the depression/self esteem part and it upsets us to see her like it.
She knew all the bus numbers and their destinations of our local town at 3-4 yr old.Can you please tell me how you got your help so we can hopefully try and have the help too.
12 Responses
Really moving and insightful. Thank you.
What an incredible read, giving me more understanding, more insight, more admiration for you and E, and even more love for my amazing nephew xxx
As Jon Snow said, 'this is your best blog yet'.
Really hard hitting. Powerful stuff. Thanks for sharing
Hello Matt – I lost my last comment but am trying again. Just to say how powerful your piece is and that I recognise it all. My son is now much older and our journey (sorry for cliche) has taken us to an understanding of autism as a family process actually & that was what interested me most about your blog post. I felt for you and your son living with this level of anxiety and can say that it decreases with age and more exposure to surviving new experiences and due to the huge autistic strength of logic. Once you can explain more things to your son as he becomes more receptive to such reasoning many fears can lessen – though a fearful outlook is certainly a character trait for autistics throughout life, coping strategies can be learnt and definitely kick in. So there is that – but there is also the developing sense of what autism is in the longer term and the wider sense as we go through it and gather layer upon layer of gradual insight. It's been a revelation to us all as a family to begin to own our own autistic traits and discover that autism is family, autism is a culture and autism (in my view) needs companion voices within the family to feel truly part of it. Our son has for may years felt marginalised not only in society but within the family group – the only diagnosed member. By going as deep as I can into autism by immersing myself in autistic adult blogs and developing friendships with autistics and hiring an autistic mentor I have come to understand from within my own autistic ways. The spectrum idea is both the most helpful and yet confusing/divisive model available to us. It is indeed a spectrum – with some us going about undiagnosed but autism is so different in each individual and from what we think it is. It's taken me 17 years to grasp this, but the difference to our son in feeling that he is from an autism family and not alone is extraordinary. The difference for us too has been equally so. I hope this makes sense and doesn't seem too far from your reality or alienating. I share it in a heartfelt way – to send hope and to highlight that the autistic adult bloggers are a wonderful resource. I can share my top tips if you are interested. Also a book called I Dream in Autism by Richard Maguire is perhaps (out of many) my best resource for understanding autism I have come across. Sending best wishes, Sonia.
Thanks so much. The more people know, the more they understand him. Like you.. He loves you! X
Amazing, insightful, enlightening, moving. We're so proud of you xx
Hi Sonia
Wow, that's so detailed and thought-provoking, a 'reply' comment won't do it justice. The whole concept of 'an autism family' is fascinating. And makes total sense. I take heart from your words about levels of anxiety subsiding, and also your thoughtful approach to immersing yourself in it. Meeting autistic adults for example. A complete embracing I guess. Thank you – I will also check out the book too. Matt
Hi Matt – you are so welcome. Our son also was terrified of dogs. To deal with specific dogs that you can control (i.e. avoid) we found it helped to have a photo of THAT dog and draw in pen a crossed out sign (dog gone). The terror would always subside – bit of course it has to be a case you can guarantee. This fear has all but gone – yet we won't be acquiring a dog as a pet as he is now too anxious about not looking after the dog properly and inadvertently killing it! Well anyhow – I am so glad this was helpful. I loved the blog post and know you will get through this to a place of even deeper love and acceptance. Sonia
Thanks. Jon Snow has been amazing support for the blog and advocate for all things autism.
As fascinating as it is touching. x
Thanks Oli. Really kind message.