The pressure to “fix” autistic kids is hurting families

I’ve been raising, loving and supporting my own autistic children (four of them: 27, 20, 14 and 11) for 27 years this year. We’re a completely autistic family, with additional forms of divergence thrown in for good measure.

Can I tell you my number one regret? Being convinced that therapies and interventions were more important than their childhood.

Yes, accessing therapies that support us and our children are beneficial, but how do we know what’s what when we’re new to parenting autistic kids?

I know what it’s like to feel so stuck between the longing to be present with, to love and enjoy my autistic children - to play with wild abandon and love their wonderful ways; and to live with the pain in my tummy that I am never doing enough.

But what is enough? If we took every single approach, piece of advice, therapy..one lifetime wouldn’t be enough to implement them.

And better yet..how do we measure enough?

The pressure we can feel around therapies being more important than having an actual childhood is very real, and I’m sorry so many of us do not access safe and actually helpful supports without trauma and distress first.

I learnt this: a person being autistic is not an instant qualifier for therapies. Therapies can be wonderful! BUT, believing or assuming a person requires them simply because they’re autistic is ableist. It presumes there is something about the person that requires support or even fixing because of their neurobiology as opposed to assessing based on required supports in alignment with quality of life.

A sense of urgency is often placed on families in terms of the ‘window of opportunity’ in accessing supports, which of course becomes too much for the parent left to navigate such challenging decisions alone so we can end up just trying anything and everything all at once.

And we burn out. All of us. Family burnout.

The information most predominantly available is often suspended in doom and gloom OR the autistic space is saturated with high masking white experiences of being autistic.

If I could go back, I’d connect with families of non speaking autistic children (like my now teen), who were implementing and practicising a range of communication supports such as AAC and spelling. I’d find peer mentorship and support with families who, while they were real about the pressure, constraints and stresses.. were not invested in curing or eradicating autism.

Autism doesn’t exist - not in the abstract; autistic people do. I don’t take my autism off at the end of the day like a coat, nor do my children.
We don’t want to eradicate our children.

I looked for evidence based therapies for my children and I came unstuck. I’m serious.

My non speaking beauty ended up with significant trauma as a result in the first years of her life. I was disconnected from my intuition and was convinced I couldn’t possibly know what was good or right for my child because they are autistic and I needed to be a professional to know anything.

I am autistic. And I still believed that.

I am their Mama. I trust my intuition today, and I enjoy my children.

Therapies are wonderful when they’re supportive, helpful, practical and necessary. A person being autistic is not an instant qualifier for therapies. Therapy is based on need, not eradication.

We’re not curing or eradicating our autistic children, we’re supporting them. And if we want to change them so much that they are as little as the version of themselves we currently see, then we are not seeing who they are. We are pathologising them.

Enjoy your children. I promise you it’s okay to.

We’re so often encouraged to be projecting so far into the future, we miss who our children are here and now, today.

And for those that will say therapies must be prioritised because we parents will not be around forever and our children must be prepared… okay.. yes, but we also don’t want to be spending the time we do have with our children recovering them from trauma they experience in the first years of their lives.

Be among people who work toward making it work. Be among people who see their autistic children as human - whole and complete people with a right to quality of life, choice and agency.

You have the right and the freedom to love and enjoy both your children, and being a parent in the moments where it is possible.

“Every moment is an opportunity for therapy” - rubbish. Therapy is in place to support living. If we never make time for the living, what’s the point?

KF