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  • Writer's pictureKristine Mastronardi

Jake & "The Autism"

Lately, I have been wondering whether I should say autistic student as opposed to student with autism.

Not being autistic myself I want to be sensitive to people with autism, or should I say autistics?

I asked Jake and he prefers autistics. I think I do too. There was a time when I probably would have not agreed with Jake but we have come a long way in our autism journey and we are very comfortable with the “A” word.

When we first got the diagnosis I hated the word. Mostly because I was scared of the future. I didn’t know anything about autism or autism outcomes.

Fortunately, for us we have had great success. Yes, we still have things we are working on, as does everyone. I believe everyone has something they struggle with, whether it’s anxiety, depression, learning issues, eating issues, relationship issues etc. We all have our highs and lows.

I attribute all of our success with autism to parent training through RDI. I learned first how to be a guide to Jake despite the autism.

Even though Jake prefers autistic adult, Jake isn’t the autism. However, autism does permeate everything about him. But, Jake is still an individual with his own strengths and weaknesses.

I guess it is kind of confusing.

But what I know for sure is Jake was able to learn through experiences during our guiding engagements that positively impacted his quality of life. The work we did and still do with RDI minimizes the effects of his autism.

I’m not trying to change him, I never would want to. I just want the true Jake to shine through.

And so does he.

Below is a video of Jake and I talking about “the autism”. And his brother connecting with the “real Jake.”

Disclaimer: Jake curses in the video but I wanted to keep it authentic so I kept it in. The struggle is real.

So how does the real Jake shine through?

By beginning aware of his own strengths and weaknesses. Being aware of how to deal with his anger, being aware of his own personal anger triggers, being aware of his own challenges being able to take someone else’s perspective, being able to handle when someone tells him what to do, being able to handle change in routine. Even though Jake has made tremendous leaps in his flexibility there are still times when adhering to a strict schedule trips him up, like walking the dog for example.

And it’s not all Jake’s responsibility. Jake’s brother, Tyler, also needs to see Jake’s perspective and be respectful of Jake’s needs.

And we all can relate with our own issues. I know when I’m feeling stressed I am not as patient as I normally would be.

We teach our students what works for them, what they need to watch out for. We form hunches and we test strategies out. We never think it’s a one size fits all model, and we are never done. We are all works in progress.

But the cool thing is our kids start to see themselves as capable of evolving and growing, they are not stuck. They begin to learn to use the tools to help themselves become the best person they can be. When I say Tyler wants to see "the real you", Jake’s response is so beautiful as he replies, “Don’t we all”.

Yes, Jake. We all all want to be our true authentic selves, flaws and all.


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