The following is another article from guest blogger Jane Hughes (my mother). She describes my childhood, the families gradual awareness of my Asperger’s Syndrome and the problems we ran into later down the line…
One of the curses of being at home a lot is probably spending too much time on Facebook. On my news feed I keep seeing the link to an article called “Early Warning Signs for Autism”. I usually ignore things that pop up uninvited, but after the sixth posting, curiosity got the better of me. Any one of the so called indicators could have been applied to a neurotypical child. Nevertheless, it still got me thinking… Gwen was diagnosed at the age of six following a long process started by her Nursery Teacher when she was four. Whilst this is earlier than many for many children, her needs were still considered significant and others have been diagnosed as young as two or three. Had I missed something? Would an earlier diagnosis have changed anything?
I don’t remember Gwen’s early years as being particularly difficult or unpleasant. At Toddler Groups and Playdates she often played alone on the edge of the group, but rarely seemed unhappy. She adored her cousins, and had two close friends (a close friend’s kids) whom she more or less grew up with. I couldn’t imagine her future life as a chat show host, but at three and a half her social skills gave me no cause for concern. She was her own person, from an early age articulate, creative, imaginative and slightly eccentric. The only warning sign for autism might have been her tendency to wander, sometimes long distances and always completely unafraid of the consequences. With enough adults on hand to follow her (at a safe distance) this didn’t feel like a major problem, more a sign of a healthy curiosity about the world around her. She learned to speak at an early age, sometimes adopting what others might consider to be unusual turns of phrase. As a toddler, when hungry she would ask for ‘side’. Whilst a little unsettled by this at first, her logic soon became clear. When I breast fed her as a baby I often said ‘I’ll put you on the other side’. Gwen was naturally linking the word ‘side’ with a source of food. No matter how many times we corrected her this use of side persisted – an early sign of echolalia?
Health Visitors came and went. They told us that she was not achieving her milestones in terms of socialisation, coordination etc. But she remained bright, engaged with her family and close friends and (on most days) happy. School nursery loomed. Our local school contained a small and caring nursery unit. Its staff were used to seeing problems associated with long term poverty and difficulties parenting. We were considered a stable middle class family. When concerns about Gwen’s development and ability to socialise were raised; I felt judged and frightened. How could anything be wrong with my wonderful little girl who was so kind and could draw stick people like beautiful mermaids? Was my parenting lacking?
Her Nursery Teacher had noted that Gwen displayed the purest form of enveloping (placing collections of objects in boxes and containers) she seen in over twenty years of teaching – a classic sign of autism. Psychologists were summoned and when she was six our kindly local paediatrician delivered his diagnosis: “Gwen has needs on the autistic dyspraxic spectrum”. She was not “statemented” (the term then given to the higher levels of statement of educational needs), but he noted that in neighbouring wealthier districts she almost certainly would have been. We chose to go with the first decision, not wanting to put Gwen through a complex appeal process. After all, our lovely daughter was still happy and doing fine……wasn’t she?
The time that followed was something of a blur. As she moved from Primary to Secondary school the bubble of love and acceptance that had surrounded Gwen in her early years slowly evaporated. As parents, we soon learned that simply loving and accepting her could not shelter her from the condemnation and judgement of the wider world. The older Gwen got, the less control we had over how this world affected her. Bullying, self-harm and ultimately several year’s engagement with mental health services followed. Had we failed as parents to give our lovely daughter the tools she needed to live in the real world?
It’s taken a while, but it really feels like a corner has been turned. I’m so proud of how Gwen has gathered her own resources and come through this with such a calm and thoughtful head on her shoulders. She finished university with a first class honours degree and set up the Seeing Double project, going on to secure an additional part time job within only a matter of months.
The question remains, should (or would) we have done anything differently, if we knew what we know now? If we’d been aware of Gwen’s autism at an earlier age would things have been different? I guess we’ll never know. All I know is that acceptance has to be the key. Her lovely friends have never seen her as “different” or “disabled”. To them, and to us, she’s just Gwen.
Would I have benefited from an earlier diagnosis? Yes and no. From a purely professional point of view I would advise the parents of autistic children to get a diagnosis as early as possible. This will provide an appropriate frame work for understanding your child’s needs and behaviour, and helping them interact with the world. For children who require a higher level of support an early diagnosis is (or should be) the gateway to autism specific services such as special schools, speech therapy and respite care.
From a personal point of view… I’m glad I didn’t get an earlier diagnosis. Due to my educational needs, an understanding of autism was necessary by the time I started school, as teachers would have to take a slightly different approach and provide extra support when necessary to help me keep up with the other children. But before school… It was nice to have a happy, care free childhood without the label of autism. It was nice to run and climb, paint and draw, tell stories and just enjoy my parent’s company without them constantly worrying about social development, neural pathways and all that jazz. I’m glad I didn’t get an earlier diagnosis. I’m even glad that several years later the shit hit the fan and I found myself spending a lot of time in therapy, because overcoming those issues is what’s made me into the person I am today: a beautifully flawed human being.
However, I need to stress that what was right for me may not be right for other people. I think the main reason my parents didn’t notice my autism earlier is that I come from a family of quirky, middle class hippies, where my eccentricity is not only tolerated, but celebrated. What if I had been born into a different family? A family that wouldn’t allow me to express myself creatively for fear of mess, or refused to let me wander and kept me on a pair of child reins? Well, then thing’s would have been very different. Since the purpose of the wondering was to expel excess energy and take myself away from uncomfortable sensory environments, if I was forced to keep still I probably would’ve found it hard to concentrate and been much more to prone to stimming, melt down’s and screaming fits. As for the creativity… well, being creative is, and always has been essential to maintaining my mental health. At times when I’ve not been able to create/imagine I’ve often stopped socialising and disappeared into myself completely.
Early diagnosis is very important. But what’s even more important is accepting and embracing your child’s quirks. If they need to wander, let them wander. If they need to make a mess, let them make a mess. After all, I’m sure you’d rather have a happy child who’s visibly autistic than a miserable child who can “pass” for neurotypical, right?