I used to have nightmares; vivid, strong, crying nightmares that would make me wake in cold sweats – but they’re not what you’re likely expecting... While I had normal real nightmares with monsters and traumas – they were also nightmares of the various ways my life could have turned out, had my parents gone down a different route when I was a child or teen. Specifically – if I had undergone harmful therapy. Support offered for parents of Autistic children or teens, is scattered and minimal at best – but its also incredibly ableist, gaslighty and harmful too – focusing on perceived progress and negative stereotypes or misconceptions rather than the actual reality for that individual child or teen.
In my nightmares, I’m a tiny child sat on a squeaking chair, at a table, my mum is sat next to me on one side, and my dad is sat on the other side of me, and opposite us, is a therapist who is not smiling. The therapist says: “Your Autistic child will never have a job or contribute to society. Your child will never find meaningful relationships. Your child will never understand what love is. Your child will never communicate. Your child will never conduct herself appropriately in society. Your child will never understand you or the world around. Your child needs therapy if they are to have any hope for the future or any hope of you reclaiming your life back that your child stole from you. Your child will always be lost. Let us help you find your child.”
in my nightmares, I’m muted with shock – I look at mum, suddenly desperate – “Please don’t believe the lies!” I beg with my eyes, but she doesn’t see me. I look at my dad, fear growing “please believe in me!” and he doesn’t see me either (I feel awful even describing this nightmare, because I’m very privileged with amazing parents who are wonderful and ‘see’ me and support me so much). Back to the nightmare- its as if I’m ignored; My mum and dad look over the top of me, as if I wasn’t there, nod, and stand up and they are gently lead out the room, away from me, so I’m left all alone. Then, the nightmare, begins.
This is a nightmare I have frequently, that thankfully has never been my reality. Although my parents have been told similar things before, I’ve been fortunate to not be a victim of any harmful therapies. I am an example of an autistic kid who could easily have been swept up in ABA style therapy
I was non verbal, and often communicated in frowned upon manners I missed all my milestones I took my time, taking AGES to process basic information...
I was easily distracted
I ran wild everywhere I went - often known affectionately as a whirlwind
I didn't learn well in classrooms I was forgetful / had poor visual and auditory processing and often 'lost' things
I avoided eye contact or touch.
I couldn't process instructions and appeared to 'manipulate to avoid work', 'skive' or 'refuse to comply' I had severe shutdowns and chronic pain and sensory distress
I easily could have been someone who was forced to hide or ignore all of these things in favour of ABA style therapy or a mask of normlacy.
Thankfully, I wasn't forced to endure that - and that (amongst other privilege related reasons too) is why today, I am not only successful, happy and at peace with my hardships and disability - its also why I am as enabled as I am.
Even though such people were kind of right about a few of my struggles - (y'know, that I'd struggle) - they were very wrong about everything else. Most importantly their ‘perceived progress’ wasn’t helpful or safe progress for me, at all... the only progress was in the eyes of a society that sees progress as being ‘normal’.
If I'm still disabled even with the most empowering of support and understanding enabling me to be my best self, just how disabled would I be had I suffered through ABA style therapy? Had I endured years of self loathing and lack of respect or self care? had I of struggled through years of being convinced that I was such a bad person that even the people who love me are percieved to secretly hate me enough to make me change every aspect of who I am? I dare not even imagine, because the alternate reality is terrifying, and its also reality to millions of Autistic just like me, who could be enabled so much, if they were just given a chance. I am likely as trauma free as an autistic person can be, and I still have Complex - Post Traumatic Stress Disorder, caused from the emotional abuse all autistic people face, even though I have endured a lot less of it!, thanks to my amazing and understanding environment and family and support network! adding more trauma and trauma defence mechanisms to a baseline of emotional trauma, is only going to create a recipe for disaster, in my eyes!
I like to think I’m smashing their stereotypes, succeeding and happy because of the ‘anti ABA style’ environment I grew up in. Yes-the people that said I’d struggle doing ‘this, that and the other’ are right, about some things. I can’t work. However, together we made my passion my career and my job and MADE IT WORK FOR ME. So what if I work several hours a month? I still work and have a career that’s accessible to me. I’m also multi world / national award winning in my field and a best selling author, so there’s that too. I contribute by empowering understanding of a very misunderstood disability. Even if I didn’t contribute, my worth would be no less valid, because I am a human being.
You know what-yes I struggle- but I am worthy and valid as a disabled person regardless of my ‘contribution’.
I like to think with my happiness, inner peace and success, I’m showcasing just how much acceptance, support and non aba therapy’s change lives. because they’re right-I struggle a lot and I am disabled - but I am happy and at peace-and isn’t that the point? Thanks to being 100% accepting of my disability and my Autism, I love my Autism and now wouldn’t change my disability for the world -because I was enabled to learn to understand it-not hide from it.
I communicate well. For someone who was once a nonverbal deaf child, now all I do is talk-and I talk on stages in front of 100s of people, because I love to, because I want to help, because I was enabled to. I love and am loved so deeply that I would do anything for the people I love.
I have so much empathy that it hurts, so much that I try to help, even at harm to me. I am married and have discovered over our decade together that love is so much more than romance or lust / sex, and that love evolves every day, if you appreciate and work at it.
Our love when we first got together was amazing and fulfilling-but it was a tiny fraction of how much love, understanding and acceptance we now share. Our love evolved and has taught me to evolve too. I was taught to love and accept myself-so I was able to love others so much more.
Even if I wasn’t able to love myself-my love for others would always have been there-maybe just misunderstood. They were wrong about love.
Yet-How much would I love myself if I had been taught to change myself all the time because I’m never good enough or wrong? Not a lot, I’ll bet.
True-I don’t have many life skills- I can’t drive, likely never will.
I can’t tie my shoe laces, or leave my house alone
I am not always independent.
Most of the time I can’t make really basic connections.
I have no control over my finances, chores Or paperwork.
True my Autism disabled me and is hard to function ‘normally’.
Sometimes I can’t walk, feed, dress my self or do basic self care / life skills.
I have no executive function and can’t process information to get things done, no matter how important, or life threatening.
In fact, I’m often so disabled by my Autism, that I wonder how it’s possible for me to be seen as ’normal’ or nondisabled. I struggle; but I’m happy and accept myself. I have learnt with support to work through it and establish what empowers me.
Does any of this mean I’m less than? No. Does any of this mean I wish I had done aba style therapy? Absolutely not.
I got where I am today as a successful happy and loving human being, by being accepted and supported. by always knowing that when I failed it wasn’t my fault, but the fault of a inaccessible society-because I always tried my 100% best.
It’s okay to disagree-I won’t judge. I can understand how desperate and tough it all is-wondering how to help your child. with so many positive reviews it’s hard to understand how it can be bad. Yes, the child made ‘progress’-but it depends what you view as progress.
no hate please – at the end of the day, we all want what is best for Autistic people and we are all trying to help – us having different truths doesn’t change that. Regardless, when I do wake in a cold sweat from this nightmare, I’m thankful it didn’t happen to me. Then my heart breaks at the thought of others being forced into it.
I know I'll never give up on our human rights, even if they are misunderstood and shrouded with stigma and shame. I do know though, that I'll never blame parents for falling into a trap so deliberately set for them, by society. All the parents, professionals and people who swear by these harmful therapies because they don’t yet understand what perceived progress is and how it’s harmful, are still only trying to help, the only way they know how to at the time. Its not their faults. Its societies mistake. We need to stop blaming parents for trying to help their children through an incredibly difficult and misunderstood diagnosis, while being baited and forced to fight for the bare minimum within a cage of no understanding or support. The cage is society - not Autism - but society will never teach you that, and that's why we are doomed to fail. In my eyes, there's no shame, that people don't yet know how to help us, and were taught to listen to professionals and society instead of valuing Autistic voices - but I do also know, that now Autistic people are being enabled to speak out, its time to listen to what WE say helps us, and not just listen to what the professionals THINK helps us. If Autistic people say anti ABA therapy, and autism acceptance is what helps, I think its time the world listened... x <3 x