Beyond Awareness – Perceptions and Informed Parenting

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A year ago, after attending the Autism Society conference, I started thinking about the presentation for this year. So much of what I hear from parents and professionals.. what I’ve experienced with my own children’s education.. It was clear, people need a lesson in not just Neurodiversity paradigm, but what it means for care, supports and accommodations. You see, no one ever goes quite far enough. Just this past week, a blog has been circulating.

As of my writing this, I haven’t presented yet. But when it is posted, I will have presented several hours before and will be heading to dinner with friends.

Here’s the thing…Early Intervention isn’t Ableism in Disguise. I’m not going to say “not all”.. no.. the problem isn’t with early intervention itself.. The problem is not respecting neurodivergent development as valid. The problem is not recognizing disability as not just something to fix. The problem is that understanding that neurological difference is not about motivation, choice or compliance.

But you see,¬†development doesn’t happen on its own. That makes no sense. You’re a parent.. You’re supposed to parent.. Help them develop into the best autistic child they can be. That means supporting their needs.. that means modifying their environment… that means providing accommodations..and most of all teach them skills that they will need to be their best self.

Example… would you give a Blind child glasses or a cane to navigate their surroundings? Or would you let them continue to let them navigate the world without any supports? Would you teach them Braille? Give them audio books? Or would you expect them to read print materials? Tools, accommodations, supports are needed by all disabled children and it’s no different with autistic children.

Now, we’ve discussed over and over again how Applied Behavior Analysis (ABA) is abusive. All flavors are. They’re compliance-based interventions acting as if the problem is a child who doesn’t follow the rules. Rather than a child who can’t currently follow the rules because no one is providing support or accommodations or working within their body’s needs.

If we can work with parents and professionals on the perception problems they have with autistic people of all ages, we can start working on not making early intervention about helping a child catch up so they can be compliant little Kindergarteners. This is what the focus of my presentation was about.

You see…. when parents are given optimism training, even though it’s in conjunction with a form of ABA (I am not supporting the use of ABA), you see a decrease in negative behaviors and an increase in positive behaviors compared to ABA alone.. This isn’t because the child has become more compliant.. The change is with how parents perceive their children, and in turn their children (in my opinion, not stated in the research) feel more comfortable with their parents. That’s just with parents being given positive understanding of the reasons for behavior. Solely making parents aware!

When we look at developmental based therapies (Sonrise, DIR/Floortime, PLAY project, RDI, Profectum), they put a heavy emphasis in understanding autistic needs. The qualitative data from several of these shows much better outcomes. The problem is that because the therapies are based on individual need, it’s not standardized so a lot of professionals and researchers aren’t convinced that the therapies are beneficial. Here’s the thing though, I also feel that these therapies also go too far when you start to get into the higher level development stuff.. Past what Greenspan originally intended. They start to focus on social development and interpersonal skills, I think they stop honoring autistic development in favor of teaching normative traits.

We then need to head over to inclusive education practices and Universal Design for Learning and TEACCH. Where we look at what each individual child needs and provide it, not even necessarily as an accommodation, but as something available to all students that need it. In the case of TEACCH, a lot of that looks at autistic needs and provides accommodations and supports specifically tailored.

But none of these therapies quite go far enough either.. Because in their training objectives, they are attempting to make an autistic person less autistic.. Except.. this is a change in appearance.. not a change in neurology. It just doesn’t quite recognize that we should be supporting what we need to support.. modify what we need to modify… accommodate what we need to accommodate.. and that when these things are in place, you can actually educate autistic children. And as you educate them, sometimes, you can pull back on some supports, modifications and accommodations. Not because they are less autistic, but because they have learned to use the skills you’ve taught. BUT IT’S NOT EVEN GOING TO HAPPEN FOR ALL THINGS! Nothing you do for an autistic kid is going to change neurology… and nothing you do for an autistic kid is going to make society less disabling. AND THERE’S NOTHING WRONG WITH BEING DISABLED!

Photo by gagilas

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