Artwork by Leif Prime. A vibrant yellow head in side profile on a bright blue background, looking slightly downward. The eye of the head is slightly open and blue. There is a small red triangle in the centre of the head. A red, vein-like line extends from the red triangle to the outer edge of the head. The 'escaping' red line and bright colours contrast with the downcast gaze of the yellow head

We are Gatekeepers and Guides – Navigating the therapy maze

CN: Reference to features of harmful therapies

I was not identified as Autistic as a child and did not experience coercive behavioural (or any) therapies as a child. To understand the very harmful impacts most Autism ‘therapies’  have had on Autistic people, and why we resoundingly reject them, please take the time to read these pieces by Autistic people compiled here: Compliance/Social Skills/ ABA/ Indistinguishability resources).

My experience is that of an Autistic parent who was struggling (with parenting and life in general) and needed help, who reached out and thankfully got support that was right for us.

This time last year my family hit the bottom of our reserves. The result of a compounding set of circumstances including the premature birth of our twins, changes in routine, a confused and overwhelmed preschooler, mothers experiencing sleep deprivation and dealing with grief and trauma, and a new business that needed time and energy.

We simply weren’t coping. We were scared we had burned out our family and friends, who had seen us through two years of random hard stuff. We were tired; and neither intuition, nor our existing parenting skills, research, nor online communities of support were enough.

I am a social worker and my partner is an occupational therapist. We are proud people. Used to giving support, but not receiving it. But we needed it.

I want to share and reflect with you what I learned when we did reach out for professional support.
There’s a therapist who came in to our lives a year ago;

Who on the day I phoned asking for help, commented on my eldest son’s amazing ability to reenact a movie word-for-word, turning what I’d seen as a problem with ‘echolalia’ on its head in an instant. The first professional who had said anything positive about him that wasn’t trite before or after his diagnosis.

Who sat on the floor with us for 90 minutes the first time she met us, while we spoke about our exhaustion, our need for respite and wondered whether we should send one of our children to an intensive early intervention program. Who urged us not to, who said it wasn’t a good fit for our family.

Who joined our kids in their play -rolled around on the grass in our backyard with a white business shirt on, spun propellers, opened and closed microwave doors, bumped down our back steps on her bottom, shredded tissues and made my kids smile and giggle; and gave us the confidence to do the same too.

Who taught us to undo four years of a vicious cycle of -peppering our kids with questions in an attempt to compensate for their differences in communication, thus completely shutting down their verbal communication.

Who listened when we said we wouldn’t do rewards, or sitting at a table therapy, or anything that was structured or stressful for us, and then researched and thought and came back with more naturalistic and responsive ways to work with our children.

Who accepted that we went ahead and started using an Augmentative and Alternative Communication (AAC) app and one that was unfamiliar to her. Who then spent time on her weekends practising with her own family.

Who then expressed her delight in this AAC app (Speak For Yourself) and acknowledged that we had lead her to something good. Who then become teary in her last visit for the year sharing how it had enabled two children she worked with to communicate with each other;

Who told us that she didn’t need to see one of our children anymore, we were doing just fine.

Image is a screenshot of my child's AAC app. A black screen with square-shaped colourful symbols and words. Top line reads feel sad sad Belinda ball mummy bri cuddle.

Image is a screenshot of my child’s AAC app. A black screen with square-shaped colourful symbols and words. Top line reads feel sad sad Belinda ball mummy bri cuddle.

I haven’t mentioned autism or neurodiversity yet. Intentionally.Our engagement with this therapist was not the one big thing that made a difference for our family. A whole lot of good things finally started to come together. We learnt new ways of being and made all sorts of changes in our lives. However, I share with you the list of ‘stuff we did with our therapist’ because I wanted to share what support can look like when we’re not talking about cures, or instructing children, or subjecting them to hours of ‘work’. When it is focused on children’s wellbeing in the context of their family relationships.

Because first I want to clarify that we all give and receive support in interdependent ways, with family and friends, neighbours, online communities, and strangers. Sometimes Autistic and Allistic (non-autistic) people need to receive support from people we pay or who are funded to help, including professionals. There is no shame in that.

To other parents, I say, I know it is hard to find your way through the maze of ‘therapeutic interventions’ for Autistic children
If you are a parent that respects your children and embraces neurodiversity;
If you are a parent who has listened to the voices of Autistic adults and learned the long-term harmful consequences of therapies designed to treat or cure autism, that make children conform to societal norms and pass as neurotypical;
If you are a parent that thinks critically about who is in your child’s life, and how their presence can help or harm your child.

It can be scary because you wonder whether you should reject all professional support; whether accepting your child means not accessing services.

However based on my own experience, I believe that-
It is possible to both reject harmful therapies and accept positive supports when you need them

It is possible for parents to be both gatekeepers and guides, sending dangerous or unhelpful people away, and guiding and leading those who can help our children and families thrive.We can ask:
What are the goals?
To make an Autistic child indistinguishable from their allistic peers? To fit in? To sit still and make eye contact and use their words?
Or is this support aiming to reduce anxiety and sensory issues that are distressing for my child? Is it therapy to support our family to strengthen our connection,  and my child to foster healthy relationships?We can observe:
How does my child respond? Do they withdraw, run away, hide, react physically, or cry? Or do they warm to the person, and show enjoyment in their presence?

Black and white photo of myself, face toward the camera, smiling at my child, who is also smiling, facing me and away from the camera, side profile

Black and white photo of myself, face toward the camera, smiling at my child, who is also smiling, facing me and away from the camera, side profile

Being respectfully connected means… Trusting that we can listen to and observe our children; trusting that our children will tell us in their own way, who and what is OK to have in their lives; believing that the process and experience of therapy is as important as the outcome.

Being respectfully connected also means… trusting that sometimes our children, neurodivergent and neurotypical, need space and time to develop at their own pace, with the love and support of their family and community of choice.

To access supports or not? If we’re not sure, trusting our children is a great place to start. 

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