By Ally Grace
I was an autistic child. I became an autistic teenager, and an autistic adult. Then I became an autistic parent. I came full circle when I discovered that I was a parent to autistic children. If there is one thing I have learned in a lifetime spent living as a disabled person and from seeing the world my disabled children have to deal with, it’s that our society fails enormously in respecting those who aren’t the way they expect.
I believe that parenting autistic children is not much different from parenting non-autistic children. The problem is that the culture we live in has so much disdain for people who have brains that are considered unusual. The term “neurodivergent” was coined by Kassiane Asasumasu, and describes people whose brains operate in a way, or ways, that are not the socially dominant or expected manner. Nick Walker’s article Neurodiversity: Some Basic Terms and Definitions, states that to be neurodivergent “means having a brain that functions in ways that diverge significantly from the dominant societal standards of ‘normal’.”
When it comes to autistic children, parents are surrounded by fear-based theories and opinions, including from non-autistic “experts”. As an autistic adult who has thought a lot about the hidden cost of this culture, I perceive these toxic social messages as hatred against people like me. If you live in the same world that I do and not an internet-free cabin in the forest, I bet you have heard many of the same things that I have. You know what I’m talking about – the conspiracy theories, the claims of toxins, the articles that invite you to become fearful and angry, taking you further from love and peace while claiming to bring you closer. And yet, how many of us stop to think about the real people at the centre of these discussions? How many people correctly identify that the basis of these ideas is fear and anger? I have more often experienced people defining it as enlightenment or information. But while I am living a life alongside my disabled children that is full of love, nurturing, and joy, it does not seem like the families buying into fear are more enlightened or informed at all.
I believe that we could challenge the entire notion that there is anything wrong with autistic people in the first instance.
Many people don’t believe they are doing something hateful when they are discussing why their child (or others) may be the way they are. However, this is a targeted kind of discussion that has very dark undertones, and is perceived almost universally as discriminatory by autistic people.
I believe that we could challenge the entire notion that there is anything wrong with autistic people in the first instance. I know this opinion isn’t a popular one, but I think it makes the most sense. For one thing, think about the possible thought process or happiness level for a parent raising an autistic child while believing something poisoned them. Now imagine the alternative of a parent raising their autistic child thinking that they’re just fine with the brain they have, that they are wonderful, and that their child is who they are supposed to be. Who would we be without the belief that our autistic kids are broken?
As a non-autistic mom of an incredible autistic son, I’d like your opinion on using the word disability. I don’t think my son is disabled, though some things are certainly harder for him. We talk about autism spectrum difference instead of disorder, saying disorder is from an outdated medical model. He’s only 6 and we love him exactly the way he is (as we do our NT children), and try to support helping them all be the best selves they can be, no matter what that looks like. Do you think there is any downside or danger to this approach?
Hi Meg, this is Ally replying to your comment. I am sorry it took me a while to see it here under the article! Hopefully my reply is noticed by you.
I subscribe to the Social Model of disability, which is why I use the word “disabled”. It is quite deliberate because I and other disabled people see ourselves through a lens of pride, culture, and also oppression. There is a movement #saytheword which you might be interested in for more information on this topic. The Social Model of disability is in opposition to the Medical Model which purports that a person “has a disability”, that there is something wrong with them, and that it’s basically too bad if they struggle in life. The Social Model in a simplistic sense believes that society and its lack of innate supports disables us by not being suitable for our needs. It is more like, we have been disabled by community inaccessibility rather than because we are faulty. So in this sense, I deliberately say that I am disabled and I say that with full respect for myself and for other disabled people.
I also believe in the Neurodiversity Paradigm specifically regarding being autistic, which is tied in to rejecting that being autistic is a disordered way of being. I mentioned Nick Walker in the article and he has another great post that you might enjoy which is called “Throw Away the Master’s Tools: Liberating Ourselves From the Pathology Paradigm” and I think you might be interested in this because of you already rejecting being autistic as a disordered way of being.
I do think there is a downside in an approach that does not seek out the opinions of disabled people about disability, very often. So I feel like it seems extremely respectful what you are doing for and with your son at present time, but there is always valuable knowledge to be gained from reading the words of autistic adults! We know so much about what it is like to grow up autistic, so I feel like a variety of experiences are just so important to read. Nick’s article that I mentioned has some links at the side which will take you to other autistic people if you are interested in that.
I do personally feel that “difference” can be quite loaded and not much different from saying “disordered” because it still assumes some kind of default way to be and hence some people are “different” from that – I believe we should get rid of an assumed default way of being in the first place. There is a really amazing infographic made my Erin Human called “Diversity is Beautiful” which could be another angle you might be interested in. We are all different from one another, and diversity is natural and beautiful among human beings.
Another resource about respectful parenting plus autism is Respectfully Connected, which I feel you might really enjoy.
Thank you for asking me for my opinion and I am excited for your son’s future with your respectful approach! Thank you for what you are doing for him; it makes me very happy.
Thank you for your article, I really benefited from it. I wanted to ask, as a mother of ASD and NT children, how do you find parenting them all? I want to parent my children as the individuals they are, but feelings of unfairness and treating them differently is creeping up in my house. Any suggestions?