As an AuDHD person and the mother of neurodivergent teens, who are also part of the LGBTQ+ community I often sense that the perception of us is that we are somehow ‘broken’ or ‘defective’.
A common sentiment I receive is sympathy or even pity for my ‘hard life’.
Common things I hear from others when I mention that myself or my kids are autistic are, “Wow, that must be so hard, sorry” or “You’ve really got your work cut out for you.”
I often get ‘helpful’ and unsolicited suggestions for how I can ‘cure’ my and my children’s autism by cutting out sugar, changing our diets or using supplements and therapies. One person even suggested a study where someone was ‘cured’ of their autism by being given a faeces transplant from a neurotypical person. (I kid you not!!!)
How Do I Deal With This?
Well first of all, even though we have our struggles as individuals and as a family we do not see ourselves as victims.
We are not powerless.
We do not ‘suffer’ from autism or ADHD.
Most of my challenges as a mum are not because of my or my children’s autism or ADHD but rather societal or systemic.
You see, we live in a world that pathologises our neurodivergent ways of being in the world. A world that makes our ways of making friends and communicating, our joy and passion for our special interests ‘wrong’. A world that labels the way neurodivergent children play as ‘inappropriate play’.
Need support? Check out The Neurodivergent Family Toolbox
Where Does This Negative Perception Of Autism And ADHD Come From?
As an AuDHD person I am disabled, but not in the ways you would think. As Dr Jac den Houting, an autistic person herself, a medical professional, researcher and advocate for autistic people, said in her 2019 TEDX talk:
“Disablity isn’t something I carry around with me like luggage. Instead, we use the word ‘disabled’ as a verb. Disability is being done to me. I’m actively being ‘dis-abled’ by the society around me.”
Dr Jac den Houting
Like Jac den Houting, I do not subscribe to the deficit, medical definition of disability when I think of myself and my children. Instead, I see disability through the social model of disability, which recognises that the reason that neurodivergent people are disabled is because they are disabled by the environment that they live in.
Damaging Medical Language
The medical profession has long seen autism and ADHD as ‘disorders’.
It’s in the name – Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder. It is still commonplace to refer to Autism and ADHD with deficit, ‘disease’ or ‘disorder’ type language.
We get diagnosed with autism and ADHD…
The symptoms of autism and ADHD are…
The treatments are…
We are looking for a cure to end suffering…
There has been a long history in many cultures of seeing autism or ADHD as a ‘defect’ that needs to be cured (conversion therapy anyone!). For so many years the prevailing thought has been – ‘If only we made neurodivergent folks seem more ‘normal’ then we can all feel comfortable and get on.’
When you take into account all this negatively biased language it is easy to see how we might see how we as parents might want to ‘fix’ our children. After all, diseases are something we fear. As loving parents, we don’t want to see our children suffer.
Autism, ADHD and other forms of neurodivergence are not disorders, we just have different brains. For our society to thrive and advance we need diversity.
Need support? Check out The Neurodivergent Family Toolbox
Cultural Perceptions
There has been a lot of misrepresentation in films and other media as to what an autistic person ‘looks like’ which leads to unhelpful and exclusionary stereotypes.
There is also so much misinformation out there from seemingly ‘autistic-friendly’ organisations.
A good example of this is the horrendous ad campaign “I Am Autism” by a so-called ‘Autism Advocacy’ company, Autism Speaks which was very damaging for Autistic people. You can read a transcript of it HERE. (I must warn you in advance that it is extremely triggering which is why I did not publish a copy of it in this blog).
This video scared a lot of well-meaning and loving parents. It wasn’t so long ago that parents would rather have risked their child contracting a serious illness like measles because it was believed that the MMR vaccine caused autism. (A dangerous myth that has since been debunked).
These types of damaging rhetorics fuel the natural anxiety that parents feel about doing the best they can for their children.
So many well-meaning families follow the advice given to them to subject their children to therapies such as ABA (Applied Behavioural Analysis) ‘therapy’ and PBS (Positive Behavioural Support) ‘therapy’. Both so-called ‘therapies’ teach autistics to mask their autistic traits so that they can appear to be more neurotypical. Masking has since been proven to have a detrimental impact on the long-term mental well-being of autistic individuals.
Here is what Ivar Lovaas, the founder of ABA believed about autistics:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense.”
Ivar Lovaas, ABA founder
A Culture Of ‘Othered’ People
Autistic culture is a culture of the ‘othered’. We are a displaced community punctuated by intergenerational trauma and maladapted survival strategies. Unrecognised neurodivergence, low achievement in education, addiction, alcoholism and poor mental health ripple through our genealogy.
This ‘othering’ does not only apply to neurodivergent people. People have been and are still ‘othered’ for their race, religion, culture, gender, sexual orientation and for being transgender. I would like to note here that there is a large intersectionality between these groups which can further disadvantage individuals.
As a society, our answer historically has been to disadvantage ‘othered’ people by looking down at them, excluding them and segregating them.
However, call me an eternal optimist but where others see deficit I see magic.
Neurodivergent people are inherently more creative, out-of-the-box thinkers. We are the inventors, the entrepreneurs, the artists, the poets, the writers. Without neurodivergent people, we wouldn’t have things like electricity, the light bulb, the atom, Apple…
We would be poorer for not having read an Emily Dickinson poem.
The world would be without many of its most passionate citizens, warrior hearts purpose-driven to change the world.
Need support? Check out The Neurodivergent Family Toolbox
What We As Parents Can Do
Sadly the overwhelming narrative about neurodivergent people is that there is something wrong with us. And yet affirming and validating our unique identities, and our unique culture is one of the fundamental things that we and our children need to thrive individually and as part of a community.
I am starting to see glimmers of hope and change out there in the world as more and more people are being identified as autistic, ADHD or otherwise neurodivergent. However, there is still so much work still to do, it can feel overwhelming and exhausting for a lot of people.
I believe that the change is not going to happen from within the system. It is not the ‘professionals’ or the current ‘power structure’ that will make the change happen.
Change is only made possible by the rising tide of courageous autistic, ADHD and neurodivergent voices – refusing to be silent and bravely sharing lived experiences.
Change happens through our acceptance of ourselves and our differences and by normalising different ways of thinking and doing in our homes, families and education settings.
Change happens through the relentless advocacy of parents.
This quote by Kristy Forbes speaks to this for me:
“I thought I’d teach my child about the world, turns out I have to teach the world about my child.”
Kristy Forbes
Need support? Check out The Neurodivergent Family Toolbox
To break this cycle we must learn to focus on changing the environment our children live in, not the child, not the autistic, ADHD or neurodivergent person.
Yes, I am aware of the complexities and inherent difficulties surrounding this idea! Changing cultural perceptions takes time and a lot of work. However, there are things that we can do, as parents.
Here are some ideas:
- Firstly, we must start with ourselves. We need to transform our world from the inside out. As parents, we need to become aware of and challenge our own unconscious biases and ableism.
- We need to own our stories, self-validate and self-authorise ourselves as experts through our lived experiences.
- We need to change how we refer to ourselves. Change our language from ‘disease’, and ‘deficit’ vocabulary towards autism, ADHD and other forms of neurodivergence to more affirming vocabulary and advocating for others to do the same.
- Take the shame out of parenting and adopt a Connection-Focused Parenting approach that will help your children feel safe, accepted and supported by you.
- Support your child to identify their strengths and nurture these in them.
- Educating friends, and family on how to be inclusive of all neurotypes’ ways of thinking, communicating etc.
- Advocating wherever possible for your child’s rights with teachers and medical professionals.
- Being humble, respecting others’ experiences and listening.
Don’t ever forget that a small group of thoughtful people can change the world, it’s the only thing that ever has.
Aaron Sorkin.
Subscribe to The Connected Parent Blog and get notified when a new blog is published straight to your email inbox. Don’t miss our Weekly Blog full of Inspiration and helpful Parenting Tools.
Meet The Person Who Wrote This Blog
Tanya Valentin is a Trauma-Informed and Neuro-Affirming Family Coach, NZ Registered Teacher, Lecturer (Te Pukenga – Early Childhood Education and Care), Author and Podcaster.
Tanya is a Neurodivergent person and a proud Mama of 3 Neurodivergent humans. She works to support, educate and foster inclusion, acceptance and positive life outcomes for all neurodivergent children, teenagers and adults in all her areas of life.
Tanya lives with her family in beautiful Northland, New Zealand. She has authored several books and blogs and co-hosts the Seen Heard Accepted Podcast with her family. Tanya is the founder of the Neurodivergent Family Toolbox and the Parenting Neurodivergent Kids Together Community and podcast.
Tanya is committed to making a difference in the world by supporting parents with practical tools and strategies to help them understand their child and their unique wiring, feel confident in their parenting and nurture strong connections between themselves and their children.
Need personalised support for yourself and your family? Book your FREE 30-minute call with Tanya
