I am a parent to autistic children, and am also autistic myself.
In my day to day life, I meet other parents of autistic children. Parents are often immensely ableist, seeing their autistic children through a lens of deficits and pathology-based behaviours, and viewing the very concept of being autistic as a kind of ‘something gone wrong’.
Because of all the inherently negative and pathologised messages we experience all the time about autism, even the most well-meaning of parents will usually have a lot of baggage to discard on the journey to becoming truly respectful of their autistic children and on the way to understanding the concept of the Neurodiversity Paradigm.
Many people are still existing within the Pathology Paradigm of autism and neurodivergence, but are so close to getting out of that paradigm and into something more joyous and freeing.
This post by Nick Walker can provide more information on the topic of Neurodiversity, if you’re looking for more information at this point.
I decided to compile this resource of Frequently Asked Questions I get from parents of autistic children, and my answers.
I just want to do what is best for my child. Can this notion of Neurodiversity help me do that?
Yes, absolutely! The notion of Neurodiversity can allow you to embrace your child for who they are, and it can empower you to look for respectful solutions to everyday problems. It can also help you to raise your child to feel empowered and content in their own skin.
Do you think I am ableist? I thought I was helping my child…
Yes, I think you’re ableist. I think most of us are ableist (even if we are ourselves disabled), and because the social climate is ableist, it takes a lot to question ourselves. They way to be respectful is not about being perfect, but we can question our own ableism so as not to let it interfere with our children and their rights.
That is hard for me to hear. I didn’t think I was ableist and it hurts to be told I am.
That’s fair enough. However, if you want to do what is best for your child you will need to move past that in order to begin to shed this ableism from your everyday reactions and choices.
How does it feel to be autistic?
That is really complex and difficult to answer. I cannot explain that in as much depth as would give you a good knowledge of it, however there are so many autistic writers you can look to for guidance on that. If you are asking me to to describe how I experience life, as compared to how you experience life, this is a huge question.
Is there a quick way to understand all this?
No, not really. The hardest part is challenging yourself and dominant social assumptions. It is a long road but the great thing is that you’re already on it. You’ve started; because you’re questioning yourself.
Do you think vaccines/gut health/induction/depression/GMO’s cause autism?
No. I think autism is a natural and beautiful part of the diversity of human kind. Talk of cause is a part of the Pathology Paradigm. You don’t speak about what ’causes’ people to be non-autistic, so why talk about what causes people to be autistic? That kind of questioning is pathologising and ableist and will not help you to develop a more respectful way of interacting with your child. It won’t help your child to thrive.
But the pediatrician/naturopath/ABA Therapist/teacher/psychologist/chiropractor told me x…. are they wrong?
Most research on autism and most ways of interacting with it, are highly ableist. Most professionals are ableist and will work on the assumption that your child needs tinkering with, fixing, or ‘training’. Be very wary of these people if you want to be respectful of your child. It isn’t respectful to treat someone like there is something inherently wrong with them.
But, I thought you could lose an autism diagnosis?
Being autistic is your neurology. You cannot become non-autistic if you are autistic. Losing a diagnosis is highly questionable, as most methods of interacting with autism involve training and forcing someone to repress natural ways of moving and being and socialising and existing. Repressing those things doesn’t make someone any less autistic; but it could make them seem so. Also – such a person has been taught to repress themselves. What cost comes with this?
Professionals are not generally concerned with this question, because they see autism as bad and they see any reduction in the obviousness of someone being autistic as a good thing. This is because they are highly ableist and care more about a person seeming less autistic, than they do about their well-being, happiness, and other markers that we would see as important in non-autistic people. People appearing less autistic after being trained to repress themselves, is a very questionable notion.
What about the overdiagnosis of autism?
Overdiagnosis is a myth. Many parts of the population don’t have access to the resources to pursue fair and accurate assessment for their children. For many autistic adults, assessment and diagnosis is out of reach. There is a problem with unequal access opportunity to assessment, as opposed to an overdiagnosis problem.
I hope these questions aren’t invasive?
Actually, they are. I have disclosed to you that I am autistic and you are asking me heaps of stuff while assuming that there is something wrong with me. If you want to really operate respectfully with autistic people, you need to drop the assumption that something went wrong to make us autistic.
I never said that I thought something was wrong with you.
But if you see autism as something that has been ’caused’, that is the implicit belief underlying this assumption.
Why are you referring to being autistic as being disabled? I don’t see my child as disabled. There is nothing wrong with him!
Being disabled or identifying as disabled doesn’t mean there is something wrong with a person! The Social Model of Disability is one that views being autistic (or otherwise disabled) as existing in a society whose default is based on the majority ways of functioning and being. This means that, as a natural flow-on from that, if you operate in a different way to majority, you are not being catered for. In this way, being disabled means you have had barriers put in front of you that others have not had put in front of them.
It doesn’t mean there is anything wrong with you and it isn’t putting yourself down to identify as being disabled.
I don’t believe in normal. So, I don’t understand why we need to talk about people as being autistic.
It is the Pathology Paradigm of autism that sees autism as a deviation from ‘normal’. The Neurodiversity Paradigm doesn’t believe in a ‘normal’ way of being. It believes that naming neurologies, isn’t bad. This is because it believes that deviations between humans, in neurological makeup, isn’t bad but natural. In insisting on not naming autism, especially in light of the Social Model of Disability, this is actually playing into and supporting the notion that there is a ‘normal’, or default way to be.
How can I get my child to stop doing z…?
You’re asking the wrong question. That is a question from a paradigm that sees autism as a problem and that doesn’t understand that autistic people live in a world not designed for them. If you want to help your child respectfully, you need to think about support as opposed to quashing behaviours.
But, my child is doing x behaviour.
They aren’t doing this at you; and you don’t need to view their behaviour in that way. It’s not personal, they are learning – as all kids are learning.
I don’t think that doing nothing is good parenting. Is that what you are advocating?
No, I am not advocating doing nothing. This is not the alternative to being ableist and disrespectful. The alternative is to help our children in respectful ways that do not approach them as inherently damaged or wrong.
What about therapy?
Many therapies (even most) are based on training and on normalising autistic people (to make them seem not so autistic anymore). This is a problem. If you wish to seek therapy or professional assistance in your parenting journey and in your child’s life, I think it’s important to make sure these therapies are respectful and not based on the deficits assumption of autism.
I’m worried about labelling my child.
Fair enough. We live in a society that equates being autistic with being inherently damaged or wrong. It makes sense that people would tie up autism with that notion, without realising they can be separated. Being afraid of autism and the notion of being autistic, means you have pathologised autism and autistic people. You do not have to do that! And, it isn’t a word’s fault that you have assumed what you have. Being autistic isn’t an inherently medical notion and you can seek to embrace the Neurodiversity Paradigm regarding autism.
I don’t see my child as autistic, I see them as (their name).
But you don’t have to discard the fact that they are autistic, to embrace them as they are and to love them as their full self. It is actually super ableist to believe that in order for someone to be themselves and to be loveable and worthy of respect, they must discard the autistic part of themselves. It stems from the assumption that autism is inherently negative and we must ‘overcome’ it or push it aside to be content and respected and worthy. We don’t though. We can be autistic at the same time as being ourselves. And being autistic is a part of being ourselves.
Why would being autistic detract from our children being their amazing selves?
I don’t think my child can be autistic, because they have so much empathy.
Being empathetic doesn’t mean someone isn’t autistic. Many autistic people are highly sensitive to the emotions and feelings of others. Many autistic people identify as empaths.
My child is highly sensitive/introverted/extroverted/anxious/gifted, so I don’t think they are really autistic.
Many autistic people are in these categories as well as being autistic. These things don’t negate one another, and don’t negate being autistic. If you are afraid of this notion of autism, this points to deep-seeded ableism.
It hurts me to see my child struggling.
That is understandable. However, if you are assuming that your child is struggling because they are inherently faulty, that is a problem. You need to move away from these feelings that are based in ableism, to respectfully assist your child. Clinging to the claim that you ‘just don’t want to see them suffer’ isn’t going to help you become less ableist.
Are you happy being autistic?
Yes. I am content in my own skin. I value myself for who I am as my autistic self.
How do I move forward from here? I feel like I have so much to learn!
Well, asking these questions is a great first step! Moving forward involves shedding (or beginning to shed) the assumption that being autistic means something has gone wrong, and that being autistic is a negative thing that needs to be worked on or changed. Keep reading things written by autistic adults, and use the internet as a resource to keep up with new ideas and writings. And, begin to look at your child in a new way – through a new lens and a new understanding. You don’t need to pathologise them and the ways they act or communicate, or throw up your hands when they act autistic. It’s okay to be autistic, and they are perfect and beautiful as their autistic selves.
Image description: Image is of a shallow creek with rocks visible. and green grass growing upward along the sides. It is sunny.
I decided to add the above photograph to the post, as it depicts a favourite place for my children and I to visit. It is a place we associate with fun and peace, and it reminds me of the happiness we have found in embracing ourselves for precisely who we are – our wonderful autistic selves.