An interesting and informative episode.

As an Australian Autistic and EDSer (only some of my self given labels) I am ashamed that my country produced Sia but we also have great Aussie Autistic Creators two recentish Australian created TV shows feature canon Autistic characters portrayed by Autistic actors. These being Heartbreak High with Quinny (Chloe Hayden) and Everythings Gonna Be Ok with Nicholas (Josh Thomas) Matilda (Kayla Cromer) and Drea (Lillian Carrier).

Looking forward to more episodes and lots of deep dives in to our culture.

Expand full comment

I really appreciated this episode. It brought up so many emotions for me. I am guilty of using the word neurodiverse. I suppose because there is a neurodiverse affirming movement. I wanted to make my clinic neurodiverse affirming. Is that bad to say as well? I’m open to any other term. Healthcare is so difficult for Autistics and for ADHD people to access. I’ve been training our clinic in co-occurring diagnoses and how to make people comfortable. (Honoring sensory needs, understanding PDA, RSD, forgiving us with time blindness, those with executive function challenges and people that struggle to manage their emotions to name a few.

I have changed to only listening to autistic people when learning about autism. I really only want my son to be with autistic therapists, doctors, etc.

This one hits home for me because I have never wanted my kids to think I was ever ashamed of them. I would say Autistic proudly and I always tell my kids I love them for who they are. I don’t remember who said it, but someone said that if they were cured of their autism then their parents would literally have a different child.

I just joined a Facebook group for parents of Spellers. The group is really difficult for me to be in. They all subscribe to the GFCF diet. Which is a big red flag for me. Although kids with gluten allergies or intolerance should not eat gluten obviously. All of the speller’s community parents all want their kids to follow in the footsteps of Autistic Self Advocates like Ido Kedar, Jordyn Zimmerman and Dillan Barmache to name a few. I constantly follow non-speaking Autism Self Advocates and appreciate everything they say, however, I would never expect my son to do the same, unless HE really wants to.

I find that many of the parents of non-speakers live in grief and can’t get over their child being autistic and non-speaking. One parent was selling this pediatric group that specialized in special needs kids. She was talking about how they all needed to take care of their bodies and that would help them to type, etc.. I asked her if the practice was neurodiverse affirming (sorry to use this word again). She came back to me and told me that we all are taking the “Autism Acceptance” thing too far. And that some of our kids behaviors are due to healthcare issues and should not be normalized as autistic culture.

I was so taken by this comment. How can we take Autistic Acceptance too far? I was not saying that Autistic people shouldn’t have access to healthcare. I fully believe this is a right just like literacy is a right. I was asking more about how these doctors were making accommodations in order to help their patients feel safe in their office. How the patients would safely access healthcare. There was no comment on that. They only wanted to discuss the co-occurring medical conditions and how to treat them.

I live in such an autism and ADHD affirming bubble. I am so taken aback when people make such strange comments. During our Coping With Hope conference for HIV, a very nice and well-liked psychologist was talking about culture and I brought up autistic culture and he was so offended that I said autistic people rather than people with autism. I corrected him to say that it was a way of de-stigmatizing the diagnosis and for people to be proud of their neurology. He was so offended. I tried to educate him about the prevalence of Autism and ADHD in the LGBTQIA population and he just skipped right over it.

I told my in-laws (who had an autistic son who also happened to have CP and hydrocephalus) about how Autism is 94%heritable and that ADHD is 99% heritable and my father in law says “So which family is to blame for your kids autism, it must be yours because it certainly isn’t mine!”

I don’t mind if my kids got it from me. I totally own the ADHD part but like I said I have a hard time understanding the difference between the two. It’s just so hurtful. It makes my heart so heavy.

Thank you for all of this and for being so excited about Autistic culture! I am excited about it too!

I shared this podcast with my niece and she loves it! I have so much more to say but will stop because I am over sharing!

I will just say that I am now a LCSW (licensed clinical social worker) and I hope to intercept families once their kids are diagnosed with Autism and or ADHD to prevent this bullying. We need to stop making parents loose faith in their kids. We are so bullied by the anti Autism, ABA culture that parents do horrible things like the Judge Rottenberg center.

Expand full comment

Thanks for taking a stand to support our people and our way of life.

Expand full comment