Autism and acceptance

image shows a fuzzy nighttime backdrop, with 2 hands at the front of the image holding sparkling sparklers, and the words ‘autism & acceptance’ centred in white text

These two words are often linked in ways that confer a variety of meanings, good and perhaps not so good. We are currently in Autism Awareness Month, also being promoted as Autism Acceptance Month. In this context acceptance is a positive goal. We need people to accept that autism is here and it’s not going away. We need people to accept autism as a variant of human life and not an aberration to be cured. We need people to accept that us autistic people are part of life and that every one of us has strengths and is of value. But, in the same way that awareness isn’t really enough, I’m not so sure acceptance is either. Like awareness, acceptance feels quite passive. “I’m aware” and “I accept” are lovely in principle, suggestive of kindness and understanding, but that’s it. We need more. There’s still a way to go.

This post developed from my growing irritation after reading a variety of forum and blog posts over the years by parents of autistic children. I’ve read parents describing how they struggle to accept their child’s autism or whether to even accept a diagnosis of autism.

“Should I accept an autism diagnosis for my child?”

This fear of diagnosis often comes from a fear of being ‘labelled’, the concept that labelling something results in a self-fulfilling prophecy, and by labelling a child autistic they will become autistic or more autistic. It is certainly not uncommon for those of us diagnosed later to appear to be more autistic following our diagnoses. However, this late regression tends to be a response to giving ourselves permission to be ourselves, releasing what we would normally suppress. It’s not that we become more autistic, more that we stop hiding our autism.

To me ‘accepting a diagnosis’ is an inexplicable quandary. I have yet to hear any parent discussing whether to accept a diagnosis of asthma, epilepsy or diabetes for their child. I can’t imagine a parent deliberating over accepting their child being diagnosed with Down’s Syndrome or Cerebral Palsy.

When parents question the validity of a diagnosis for a child who appears to meet the diagnostic criteria it makes me wonder. I wonder if perhaps their child’s additional needs are so insignificant that they don’t need a diagnosis anyway, but surely if that were true they wouldn’t meet the criteria. I wonder if perhaps they are worried about stigmatising and bullying, but autistic children (and adults) get stigmatised and bullied primarily for being different, not for being autistic (because we don’t actually wear labels in real life so most people don’t know we are autistic). I wonder mostly if perhaps people think diagnosis is optional because they don’t think autism is real.

I was joyous when my son got his diagnosis, and mine too. My response on both occasions was a sense of vindication, that I was right all along. Neither outcome was a surprise, and if a diagnosis hadn’t been forthcoming I would have sought second opinions. The identification and formal recognition of autism is immensely valuable both for self-identity and legal protection. Those of us being diagnosed later in life have a unique insight into life both undiagnosed and diagnosed. I think most of us prefer to be on this side.

“I can’t accept my child’s autism”

I’ve read and heard that some parents don’t feel they can accept their child’s autism once diagnosed. What does this even mean? I can’t understand how you fail to accept something that just is. It worries me when a parent fails to accept their child’s autism, because it can result in immense pressure on a child to perform normal. If you’ve read any of my previous posts you’ll have seen me discuss ‘performing normal’. There may be times when we feel we have to do it, but by and large it’s both exhausting and a great drain on our often limited resources. If we do it for too long or too often, or because we are forced to, we risk shutdown, meltdown and withdrawal. For too many autistic people, it results in deteriorating mental health.

I have come across points of view which equate accepting a child’s autism with not doing anything to promote development. This is quite preposterous. The parents I know who accept and enjoy their autistic children for who they are don’t sit back doing nothing. Like any parent of any child, autistic or not, disabled or not, we work bloody hard to encourage progress. But, what we don’t do is have ‘normal’ as our end goal. I think that’s the difference. For most of us ‘happy’ is our end goal.

Some autistic children might seek happiness among their typical peers, for them we shouldn’t strive to make them indistinguishable from their peers, we should find ways for them to engage with their peers as themselves, by building confidence and supporting interests, teaching them the skills to navigate their chosen social realm. Some autistic children are happiest pursuing solitary activities and special interests. We should support them too, giving the space and time to do what they enjoy, for they could be laying the foundation for their own futures. We need to work hard to find ways to ensure that the skills our children will need in later life aren’t neglected, but there’s no great rush. We have to stop working to chronological norms and accept that uneven, disordered development, the ‘spiky profile’, of autism is par for the course.

Accepting autism doesn’t mean doing nothing, it doesn’t mean treating an autistic child as some sort of anthropological curiosity who must be preserved in their natural state of autistic. Accepting means respecting and cherishing and nourishing. It means supporting and loving and enjoying. It means working to each other’s strengths to overcome and ameliorate the most challenging aspects of life. A bit like parenting any child really.

World Autism Awareness Day

Yesterday was World Autism Awareness Day. Usually I would find some way to mark the day, perhaps by engaging in online awareness raising or encouraging work or school to raise awareness. This year felt different. Perhaps because since my own diagnosis it feels more personal. They’re talking about me and people like me and it feels oddly intrusive. I want people to be more aware and more accepting of diversity in all its forms, but being the subject of an awareness raising campaign makes me feel even more separate. I understand that we need the general public to know more and know better about autism, but they also need to know more and know better about a multitude of other disabilities, differences and inequalities. We need people to be respectful and understanding of all the wonderful and more challenging aspects of human life.

One day or one week is not enough. Schools, workplaces, medical and care providers, businesses, family, friends, strangers – all people and all services need to recognise and support the diverse nature of human life every day. There are people facing real struggles every day of every week, to access education, health and care provision. If you’ve got family members, friends, pupils, employees, customers or service-users the chances are some of them are struggling, some might be autistic, most won’t be. But if they’re struggling please do more than press ‘share’ and ‘like’ buttons on social media. Please do something real and meaningful. And if they are autistic and you don’t know what you can do to help, just ask, we like direct!

If you’d like to leave a comment or press a button and you can’t see how, try pressing the little circle below.