Image of a small boy from the back sitting at the top of a step in a doorway

Lighthouses

If you’ve ever Googled ‘autism’ you will probably have felt overwhelmed with the amount of information available. You’ll read words like ‘disorder’, ‘impairment’ and ‘developmental delay’.  You’ll read that some of the really big funded organisations speak about the ‘trauma’ of parenting a child with autism and the need for research to investigate a ‘cure’.  If you knew very little about autism when you began your search, wading through this information with no filter other than your gut feelings may have left you confused, depressed and even angry. This is because a lot of the information out there sits smack in the middle of our social constructs of illness and mainstream cultural views about children.

Information on what it means to be autistic, the diagnostic process, services available and how to parent autistic children is rich in the language of medicalisation, pathologising and behaviourism. This construct sees autism viewed as an illness, a problem to be fixed. To do this we are told to go to doctors who will use a manual designed for mental illness to categorise our children and hand us their verdict. If we want to access funding to assist our autistic children, there is no other way forward than through this system. It will then be assumed that we will want to do all we can to help our children undertake years of multiple therapies designed to change them so that they can ‘pass’ as just like all the other kids. This might involve using rewards and punishments to reinforce neurotypical behaviours, such as making them socialise when they don’t want to, kissing Grandma goodbye and eating at the table. It might involve doing something called Applied Behaviour Analysis (ABA therapy), which is a method of behaviour modification that involves 40 hours a week of intensive one on one ‘work’ with your child. This is despite that fact that autistic adults who went through these sorts of therapies as children tell of the deep pain that they experienced as a result. Professionals will assume your goals include sleeping separately from your children and beginning to prepare them for school readiness as soon as they are out of nappies. If your parenting philosophy is anything like our family’s, you might have the idea that professionals in the autism field see your child as a dog that needs training.

Our family was so lucky. We didn’t come to our realisation that our family was neurodiverse through the mainstream information available on the Internet.  Our understanding came through a wonderful 4 year old called Leo and his family. At a park meet up for an unschooling group one day, I was drawn to watching Leo as he moved around the playground. Something about him reminded me so much of our little guy but I couldn’t put a finger on it. He was unfiltered in a free spirited kind of way and his use of language was way beyond his years, just like our 3 year old. When his mum told me he was autistic, I remember thinking ‘oh, but he’s so verbal’ and then I just filed it away. Later that night, I took a gamble and messaged Leo’s mum and asked about autism and language skills as like most people, I thought autistic kids had language delays. I wasn’t consciously thinking of my son when I asked this question, but in hindsight, that’s exactly what I was doing. When she told me that many autistic children have advanced language skills, something happened to my body. A sort of ‘knowing’ washed over me with the result that in an instant, I knew my son better than I ever had before.

In the months that followed, Leo’s family were our lighthouse. Nobody understands autism like another neurodiverse family. As someone who never leans on other people, I leant hard. Some nights, we messaged back and forward for hours, being guided by two incredible parents who gave me a safe place to explore what it all meant. They explained all the practical steps that need taking, which are so overwhelming at the start, and gave me contacts for the therapists that had proved so beneficial for their kids. In this way and with them walking along beside us, we managed to skip right over the whole behavioural approach to autism, landing straight in the territory of gentle acceptance. The grief still needed processing. The shockwaves didn’t go away. But we were able to bypass the mainstream approach and jump straight in to accepting our son right where he is.

It’s still early days here and we are still leaning on our new friends. They’ve given us the courage to advocate for our son when he doesn’t want visitors, when he doesn’t want hugs, when the world is too bright and too much for him. They share in the joy of a morning gone well and the exhaustion of a night of wakefulness. They are our lighthouse and we are forever grateful.

Finding your way in ‘autism territory’ can be a scary process. Based on our experience, I know that reaching out for the alternative, loving, accepting voices, most often found in the words of autistic adults or families gently parenting autistic kids, is vital. There is a growing movement of people who are listening and learning that autism is not a tragedy and that whilst in our society, it may be a disability, there is hope that for our children and with our help, the world may be more accepting of neurodiversity in the future. Walk with others who have been there before and you will not be alone.

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