Autistic in America

 Before I dive into MY experiences please remember that these are MINE. I do not attempt to or intend to speak for an entire community of people. I am ONE Autistic person. 

I spent years in my early life trying to separate myself from my younger brother's autism diagnosis. There was so much stigma and shame associated with his behaviors and my lack of understanding of them when we were younger.  In my 20's as I finished grad school with a degree in special education I started to recognize similarities between the experiences of some of my students, and my own experiences as a child. 

I was a girl in the 90s we didn't get Autism diagnoses. And I having a sibling with autism who presents very differently to me, had an even lower chance of having my needs recognized or diagnosed. There were so many red flags looking back- but that's through my lens as a professional who works with this population for a living.  

As a now diagnosed adult, I am having to learn how to unmask, how to validate my own experiences, how to not continue to over extend my social emotional and physical capacities because Autistic burn out is different. It's longer and more intense and so much harder to come back from.  This year its not even the end of September and I can feel myself flickering, this is the soonest I have ever started burned out in a school year and I have literally been set on fire in my classroom. 

This year is harder in my district for so many reason, lack of funding has slashed classroom supports, increased caseloads, reduced pay for that work and we are continued to be asked to do more with less and less and less. But I've worked really hard jobs before, but this year it's not just my job that's hard. Its the world we are living in. 

The Trump administration has been hell for disabled people as we watch grants for good and valuable research be stripped away, as we watch funding sources that allow people to stay in their communities rather than be forced into institutions be removed from budgets, as we watch this administration play games with funding special education services in schools because we use words like equity and inclusion in our work. My degree is "Inclusive Education" and I will never remove a focus on the most inclusive setting appropriate for each of my students from my work, even if this administrations ends all supports for my students. But this week has been extra hard. 

This week we were reminded again, that this administration would like people like me to not exist. They use lies and fear mongering to scare families that vaccinations an acetaminophen cause autism--which is bullshit and intellectually I know that--but RKF Jr and Donald Trump are making being Autistic in America an unsafe and mentally draining reality. Our parents don't need more guilt, we don't need to be providing false hope to parents of high support need individuals. 

What we actually need from our Director of Health and Human Services and from our President, is funding to things that do improve the quality of life for Autistic individuals.  Funding for jobs supports, funding for mental health supports, funding for day programs for high support needs adults, so that their parents and care givers can get much needed breaks- because it is hard. We need better legal requirements for employers to actually provide reasonable accommodations under 504, and the back bone to fine companies and organizations who repeatedly violate those laws. Funding for best practices in education, funding for the correct level of support for students, funding for transition programs that increase engagement in community and jobs after high school. I don't need fear mongering. I don't need a President who continues to try to make me feel less than, I don't want a President who continues to try to erase people like me. I don't want a cure, Autism is a natural part of human diversity- we should be celebrating it instead of shaming it. 

This week has been extra heavy, the last 9 months have been heavy and the thought of 3 more years of this heaviness is soul crushing.  

So I have an ask. If you are wanting to learn more about what Autistic people actually want and need, go to the autistic people themselves.  2 organizations that I love and support are:

Autistic Self-Advocacy Network and Autistic Women and Non-Binary Network

And please show our community some extra grace right now. We have an extra layer of heavy that we are carrying around, that many of us struggle to put in a box, because it's in our face all the time, and I cannot ignore who I am. 

-Claire