Autism and acceptance


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.

19 thoughts on “Autism and acceptance

  1. Beautifully put.

    Acceptance isn’t surrendering to some idea of autism as an assailant. It’s dealing with the problems in front of you and enjoying the good bits.

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  2. I loved reading that you were joyous. It has been really hard for people to believe that my first reaction to my kid’s diagnosis was RELIEF. A year later, I have had an epiphany about my own autism, and I am now trying to figure out how to best seek a diagnosis in my area.

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  3. Very interesting insight. I’ve worked with a lot of people with autism, adults and children, and the family responses are so different.
    I remember one child attending an event at a local autism charity and crying on me the next day, expressing relief ‘I wasn’t the only freak there’ – his parents didn’t want him to know of his diagnosis in case it upset him!
    On the other hand, a young lady I currently work with tends to say ‘I can’t help out, I’ve got autism’ and is resistant to all support offered. She recently hospitalised a staff member. She googles autism and identifies signs she might display and sometimes modifies her behaviour to better fit. With her, too much information without enough support is detrimental.

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    1. Thank you for your comment.

      Parents don’t tell their children for a whole range of reasons, I wouldn’t judge.

      With the young woman, perhaps you need to find different ways to engage her. Our default is very often ‘I can’t do that’, we need people to help us unpick our fears and help us come up with a plan (assuming we do actually want to do the thing!). We might also say ‘I can’t do that’ because it seems politer than ‘I don’t want to’. I’m sure I’m not the only autistic person who hates being cajoled.

      Please be careful how you interpret these observed behaviours, there might well be more to it.

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  4. I couldn’t agree more. I was so relieved when my son’s diagnosis was confirmed. It gave me a path to follow at a time where I was feeling quite lost. An early diagnosis has helped him and helped our entire family understand better why he reacts the way he does. Of course there are always exceptions.

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  5. When my sons were diagnosed, it felt good knowing that there were concrete things I could do now, to help with development and understand them better. I didn’t realize my reaction was so different, until I started reading books where the parents talked about despair and hopelessness. I do understand those feelings, though. Especially when all my boys were under the age of 5, and I was struggling to get out of bed, I had to remind myself: If I’m feeling tired, what must their little bodies feel like? I can communicate my feelings, they can’t yet. I know what to do, when I’m overstimulated, they don’t. I want to know that I did my best to allow them to live to the fullest of their potential as they age. Maybe that’s in a classroom,or not. Maybe that involves love, or bagging groceries, an executive suite etc..But I always have to remind myself, that it’s not about me. What I may feel is necessary to having a satisfactory life, may not even cross their mind as important. “Presume intellect.” Yes, it’s my job to provide them the tools to live functionally, and opportunities to discover passions and talents. But in the end, it’s their journey, not mine.

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    1. Yes. Totally agree it’s their journey, and our role is to equip with the tools they need to lead their chosen lives. My son has just decided he wants to stay in education as long as he can, so that’s what I need to help him work toward.

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  6. I was energized, after learning of my sons’ diagnosis. I now knew concrete things I could do to help developmentally and to better understand them, and could find resources and people to support us. I didn’t realize my reaction was so different, until I started reading books that highlighted parents despair and hopelessness after the diagnosis. I understand those feelings. Especially when all my boys were under the age of 5 and I was struggling to get out of bed. I had to constantly remind myself: if you’re feeling stressed how confused must their bodies feel? I can talk, they can’t yet. I can remove myself from overwhelming situations, they don’t know what is overwhelming them..and so on. Also I remind myself, it’s not about me. I want to know I’ve done my best; that they live to the best of their ability, feeling that they matter and are a worthy part of society, just as they are. Maybe that’s in a classroom, or not. Maybe that’s greeting people or bagging groceries, or as an artist. Or maybe that’s them being themselves everyday, without an agenda. Maybe they will experience a great love, then again maybe that’s not as important to them. I love the phrase, “presume intellect.” I can help with the tools for them to function socially and occupationally in society, and provide experiences to identify talents and skills. But in the end, it’s not my journey, but their own.

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