This article originates from a presentation at a Parent’s Autism Workshop, presented by the mother of a very high needs Autistic child. It is printed here with permission of both the mother, and her child.
Perspective 1: Describing my child from a perspective of viewing Autism through a lens of deficits and suffering – an existence where I perceive my child as a burden, and me as a victim to their Autism.
My child is ‘that’ Autistic child. He’s not ‘Asperger’s’, or an ‘Aspie’ as some like to call it. His deficits were so obvious, so extreme, that he was diagnosed with ‘Classic Autism’ before he was 18 months of age. Not that they call it ‘Classic Autism’ anymore, or even call Asperger’s, Asperger’s – its all ‘Autism Spectrum Disorder’ now- though how anyone decided Asperger’s is anything remotely like my child’s Autism is beyond me. My boy’s Autism isn’t ‘quirks’ or a bit of ‘social difference’. His Autism impacts heavily on every aspect of his life, and, every aspect of my life. A boy who ‘high functioning’ Autistic Advocates have no place in claiming they represent; or in claiming Autism doesn’t need a cure for. My boy will never be independent.
He’s a pre-teen now, but he still can’t speak. He can’t tell someone what he wants, or even tell someone his name. And, he doesn’t interact with people in any socially normal way – instead he hides, or runs away; preferring to stack blocks, or obsess over his random collections. I’ve never heard him say “I love you”, or even seen him wave ‘hello’ or ‘goodbye”.
Taking care of his basic health needs is near impossible. When sick, I can’t just take him to a doctor like normal people do when their child is ill – he won’t let them touch him, will strike out, kick, fight and can’t communicate what’s wrong. Trying to get medication into him is impossible. Even getting him to eat has been a living nightmare – on top of all his other care needs, I had to spend three years pureeing food daily, and forcing it into him through a feeding tube.
His senses are severely abnormal, and I mean severely – which is why he had to be tube fed. He spins incessantly too, easily breaking things in the process. He rolls around on the floor. Bounces on beds. Sniffs everything – and I mean everything, licks things, crawls down shopping aisles and lashes out if someone touches him. Every single day is a never ending battle to get him to do one thing or another. While most kids his age do such things themselves, mine needs me to help with basic care – bathing, brushing teeth, dressing – you name it, he needs help with it. As for toileting, well, we wont even go there.
Going anywhere, or doing anything out of the ordinary, is almost impossible. His rigid thinking is so inflexible that even minor change – moving a chair or having dinner at a different time – can be met with aggressive hysteria. He needs 1:1 intervention, with everything, always. My only ‘break’ from his Autism is school; but even that’s not a ‘break’. After arriving at school, transitioning him to his classroom can take anywhere up to an hour or more. And even after I manage to get him to class, I’m always ‘on call’ – never knowing when the school will call to collect him for one problem, or another.
There’s nothing good about my boy’s type of Autism. He suffers. I suffer. I’d rid him of it in a flash.
Perspective Two: A description of how I really view and describe my child – what Autism acceptance and belief in my child looks, feels and sounds like.
He is gorgeous kid, my boy – bright, active, playful, clever, capable and with a delightful personality. I just love him to bits! Like all children, he has some incredible strengths and some very high-level challenges. Some, but certainly not all, relate to his Autism. ‘Diagnostically’ they call his Autism ‘Classic Autism’ or ‘Autism Spectrum Disorder – Level 3’. I believe in my child’s abilities and he believes in herself.
I can’t speak highly enough of early diagnosis. Being identified as Autistic at just 12 months of age, and formally diagnosed by 18 months of age has provided him the opportunity to grow up knowing his Autistic neurology is a ‘normal part’ of him; no different really than him growing up knowing he was born with blue eyes and male genitalia. His sense of ‘self’ gives him insight, confidence, resilience, self-belief and self-acceptance. He’s a developing boy who knows what he likes, what he doesn’t like and what he needs to feel ‘safe’.
My boy delights in sensory seeking – spinning around in circles, bouncing, rolling – activities he engages in often on any given day. His pure enjoyment and excitement in these stimming activities is infectious and always brings a smile to my face. Together we have created a sensory friendly home – removed breakable and treasured items to safer locations, replaced sharp edged furniture with round or soft edges, installed soft furnishings and thick rugs. I love the changes he has inspired in our home – its all so comfortable and has such a relaxed feel.
His heightened sensory awareness, though certainly presents challenges, is quite remarkable – his acute sense of smell enables him to identify and relate to all manner of things, simply through smell. His high level tactile awareness enables him to be aware of a feather softly falling next to him simply by the slight change in air movement, be aware of impending changes to weather long before they occur and can identify missing ingredients from a recipe simply by feel. These strengths serve him well.
He is non-speaking but communicates constantly – through behaviour and other nonverbal ways. I always figured communication ability more important than verbal ability. Since toddlerhood he has been actively encouraged, and supported, in whatever communication method best met his needs at the time and is now a whiz in his preferred alternative communication styles. As he has grown, so too has his comprehension and use of language in communicating. I delight in his expression of love through his behaviour – his trust in me, his touch, his everesent, bouncy cuddles, the way he shares how he experiences the world with me.
His high support sensory and communication needs has inspired us to seek out different ways to accommodate him, including seeking out medical providers who have willingness to take an individual, child focussed approach. All health care providers in our life are now ones that are comfortable with alternative communication methods, focus on developing ongoing rapport and trust, refraining always from any unnecessary (or unwanted) physical contact, and accept that ‘under’ the patient bed is just as valid engagement location, as on it. I often feel grateful that my child’s needs led us to have such skilled and compassionate professionals in our lives.
Like all Autistic kiddo’s, my boy’s developmental trajectory is very different from children who are not Autistic, and indeed different from many other Autistic children. Some skills he has gained quickly and with ease. Other skills, like self-care, social / emotional development and language comprehension, he gains at an uneven, slower pace. It’s all swings and roundabouts really – he has a life span of development yet ahead of him.
He is a very social child, an ‘extravert’ in many ways, who enjoys time with his peers. While a challenge for me – mostly because I’m more your innate ‘introvert’ type – regularly initiating and hosting ‘play dates’ that best met my boy’s needs (in our home, time-limited, structured) has supported him in developing friendships. His solid group of long-term friends have each been supported in learning different communication methods, including sign language, to enable joint communication; and educated on Autism and specifically on my boys’ individual ‘profile’. They share amazing times together and genuinely delight in each other’s company. His friends recognise and accept his needs; finding them irrelevant to his personality that they enjoy, and their shared interests.
As a child who loves learning, my boy loves school. As most parents of Autistic children would know, ‘mainstream school’ is generally not structured well to cater to individual needs. Working constructively with the education system, at every level, to enable my boy to be included in ways that meet his individual needs, has given me insight into education, disability and government policies that I perhaps would otherwise never have given much thought to. Pro-actively taking a lead role in negotiating adjustments, modifications and supports that meet my boy’s communication, sensory, social and processing needs, has enabled him to shine academically in his mainstream school setting. High level challenges with transitions is a barrier that he continues to work hard at, every day, with support, to overcome. He feels pride each day when he succeeds in this.
I so enjoy watching my boy grow, develop and learn; and the opportunities and learning his ‘simply being’ has provided to me as a parent. I worry for his future at times, as I’m sure all parents do. I’m aware that he will very likely continue to have higher support needs well into adulthood and work towards long term plans to support that. I don’t perceive though, and never have, that higher support needs prevent him from achieving whatever he seeks, and is supported, to achieve; and subsequently neither does he. I’ve no doubt he will live a life that is meaningful to him, and to others. I wouldn’t change him for the world.
I owe my child, and myself, so much more then perceiving us as victims to his Autism.