Ableism in Disguise: Early Intervention

When our daughter was younger and not communicating verbally, there was a buzz of concern to act fast.

We were warned, again and again, of the consequences that come from leaving a child to develop at their own pace in a society that has a mandated one.

We tried speech therapy. And we were made aware that our daughter was informally signing. Together we learnt more and more signs and this was helpful, it opened up a line of communication we hadn’t previously had and there was less frustration for us all.

But she did not talk. The reality is that she was not yet in a position to no matter how many external forces wanted her to be or tried to condition the circumstances towards it.

The intervention suddenly switched gears; it was no longer about finding ways for us to connect but built upon a desire to disconnect our daughter from herself.

Amongst the alarm from those around us, we stopped.

The main reason for all the alarm? What would happen with school.

This loyalty to timelines often comes from a loyalty to an archaic system of education and the expectations it places on children. There’s a linear progression laid out for children and if you do not meet each step in the production line of a schooled human, then the next step isn’t going to fit; you’re branded defective and that is highly inconvenient for society.

I knew that this was not the truth we wanted to invest in.

It became clear very quickly that early intervention was not motivated by my daughter and her needs, it was focused on how to conform to a narrow perception of human existence.

It was less about creating an environment of accessibility and more about silencing her need for such.

Children deserve respect and autonomy, unconditionally and it felt as though we were being asked to have conditions. The reality is that external forces cannot change somebody, it instead censors them.

Her internal experience would remain the same but she might have felt compelled to alter her external expression because she would have been conditioned to believe them to be unacceptable. The basis for all behaviour modification.

I wanted to bring my daughter more access to the world, I did not want or need that to be at the cost of access to herself, her identity or her needs.

And I see this play out too often. People explaining that they are making a choice for their child’s benefit, that it is something they need despite in the same breathe explaining how they resist such measures and so control becomes necessary and it never quite makes sense to me; if they need it, if it helps them, why would force be required?

Do they really need it or does society demand it of them?

This urgency to conform doesn’t make sense if you remove expectations. And the urgency to conform does not help the person in question, it is just more convenient for the people around them.

I wanted my daughter to find more ease in her existence, she was frustrated but pushing her to present as somebody she is not? That’s not going to be any semblance of ease for her, for anyone. That’s going to make things feel that much more difficult.

What would bring ease? Acceptance. The radical belief that whoever she is, is worthwhile and deserves access to life without the forced responsibility to change. Finding the bridges between each of our experiences so that we could communicate was important, finding a way for my daughter to be something other than who she is? The opposite of important.

Early intervention silences. And all people deserve to live life loud.

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12 Comments

  1. I think it partially depends on the situation and the practitioner. Our son has SPD and we have had a lot of trouble with sleep and pain due to reflux and food allergies. We are going through the early intervention process at the moment for speech, psychology and occupational therapy and so far I have found it helpful and not at all about conforming. The OT and psych are especially great with acknowledging our son’s strengths rather than his differences and are helping us to better manage his energy levels and sensory needs, in alignment with our own preferences to make our everyday life calmer and happier. I haven’t encountered pressure to conform yet but I have no doubt that it is there in the background with many therapies.

  2. Yes! Thank you thank you thank you! Respectful parenting is especially rare in the autism community, which can feel extremely isolating and make access to respectful healthcare a difficult task. I know many autistic adults including myself applaud your message and wish more parents could have your perspective.

  3. Oh my God YES!!! We have 3 kids – all neurodiverse in different ways – and we have said time and time again that the “help” that’s out there is not help for the child. It’s help for their future teachers, plain and simple. We have gone to countless meetings and appointments and are looked at like we’ve got 3 heads when we start discussing intrinsic vs extrinsic motivation, “allowing” them to use their strengths, unschooling, etc. We’ve now given up on it all too, as it’s conform-at-all-costs.

  4. Really appreciate this great post. More parents need to understand the rotten ableist core of early intervention.

  5. I’m sorry, can you put this in context for me?

    Are you neurotypical parents raising neurodiverse children, or neurodiverse parents raising neurodiverse children?

    1. I completely understand why you would want this information. The truth is I’m still exploring the answer myself. I do have personal experience of being hurt by pathology, Im still figuring out what that has personally clouded for me.

      1. I understand. I just found EI to be immensely helpful for my son–and I say that as an Autistic parent of an Autistic child. All his therapies are focused on skills, not getting rid of his Autism.

  6. The only early intervention that’s needed is more hugs, tickles and kisses.

    We have a very similar story to yours, and have drawn similar conclusions.

    Good luck to you and your daughter, may her life be as full of happiness as your desires!

  7. thank you for putting into word my thoughts after living with a daughter who has dealt with autism for 42 years. people have wanted a book from me- well thank you for writing it. we so need to talk some time. 🙂 oxo

  8. Thank you for this beautiful and thoughtful piece. The more voices like yours that are out there, the more likely parents who are searching for answers will find a non-compliance-based path. I wrote a post called “Free Falling” in my blog that explores the moment of deciding to ignore the roar of “experts” and living a life that works for the child and the family. Unschooling has been a huge part of that choice, as was abandoning behavioral therapy. I’m glad to have found you.

  9. Reminds me of a joke about a boy who reached the age of 8 without uttering a word. Everyone assumed he was mute. However one night at the supper table he suddenly said “These biscuits are burned.” Amid the excitement and hurrah that greeted a child who uttered a complete sentence as his first words, they said, “We thought you couldn’t speak.” And he replied, “You never burned the biscuits before.”

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