I wanted to take a moment to post some of my very favorite blog posts, articles and social media findings I’ve come across while reading up on autism and trying to decide whether the diagnosis fits me for sure, along with a few posts about April, which is traditionally Autism awareness month. I learn a lot from these articles, mostly that I am a lot more like other autistic women than I ever imaged just a few short months ago.
Autism is important in my home every month, not just awareness months. In general I’ve never really approved of the tone of awareness month and don’t participate much. I’ve never covered it on the Zebra Pit because the whole point behind the blog is to share my personal experiences and knowledge about my own healthcare concerns and I didn’t come to suspect autism was part of that picture until late last year. While my stepson was diagnosed with aspergers at the age of 4, I would never try to speak for him.
As an autism parent, I couldn’t possibly try to set some example for other autism moms, either. I didn’t even meet Ty until he was almost 10 and while we’ve had a pretty good relationship, we’ve had our difficulties, too. I share responsibility in some of the hardest times in his formative years because while I attempted to educate myself on autism, I didn’t read enough or make all the right reading choices. I’m also human. We make mistakes.
Perhaps more surprising than an autism mom not feeling like she’s qualified to hand out advice is the fact that I had Ty in my life all those years and never once questioned if I might be autistic myself. This is, unless you realize just how differently it presents in women, not to mention one person to the next. It’s not that I was being obtuse or even lack self-insight; it’s that I had no idea what to look for in a female.
I was pretty nervous about telling Ty I suspected I was autistic and awaiting an appointment for evaluation. I half expected him to yell at me and ask me how I could have been so stupid and insensitive by pushing him too hard academically if I knew what it was that he was going through. Instead, he thought about it a moment, smiled and said “I might have guessed that. It makes a lot of sense, actually.”
Now that I’m aware of my own place on the spectrum, I feel strongly about covering ASD topics and news at the Zebra Pit. I hope to attract some autistic authors to contribute to our knowledge base, while I’ll probably focus a lot on women’s diagnosis, news and research until I am formally diagnosed. As promised, here are some of my favorite articles and posts about Autism:
- TheAspergian: 10 Things Autistic People Wished You Knew about April & “Autism Awareness Month” – This is a great post that examines the problems with awareness month historically and provides some alternative ways that actually supports autistics.
- Stim the Line: 5 Signs You May Be Experiencing Burnout – A great post that talks about Autistic burnout and how to recognize the signs (boy did I recognize this cycle in my life and wonder if it’s the culprit of my early fluctuations in health),
- The Autism-Expert Spectrum – This intriguing post talks about the problem of diagnosis and snap judgements based on a single, brief meeting. I wouldn’t know anything about that.
- Study Shows the Therapeutic Effects of Marijuana on Autistic Children– MMJ use to combat the symptoms of Autism? Yep!
- The Search for a Biomarker for Early Autism Diagnosis – This NYT article discusses the search for a biomarker and how much better outcomes are for Autistic people when diagnosed and treated as early as possible.
- For lawyers with autism, the work often pairs up with things they do well – This ABA Journal article exemplifies the many ways autistic people can thrive in fields like law and some of the ways autistic lawyers work around their known communication issues.
- I’m A Female, Autistic Lawyer, & Every Day I Have To Counter These Stereotypes – Good article about the breadth of symptoms and presentation in autistic people being much more diverse than the daily stereotypes one female autistic lawyer comes up against.
- “You’re Just Kooky”: Women Who Were Diagnosed With Autism Later In Life – Not at all difficult for an undiagnosed or newly diagnosed autistic woman to cuddle up with this piece!
- An Interview With the Creators of CAMOUFLAGE: THE HIDDEN LIVES OF AUTISTIC WOMEN – Really looking forward to reading (and possibly reviewing) this book.
- ADVENTIST LA GRANGE MEMORIAL HOSPITAL: Why Autism in Girls Is Often Missed Until Adulthood – Another article recently released on underdiagnosis of Autism in women.
And here’s a bonus from Social Media that I really fell in love with:
WHY WE DON’T LIGHT IT UP BLUE
It’s that time of year again when puzzle pieces abound and well-meaning people go blue because they believe they are doing their part in helping autistic people and their families.
Autistics are asking everyone to please stop. But there’s still something you can do to be involved in a respectful and positive campaign.
Anyone with ears to the ground in autistic spaces is hearing an onslaught of frustration, sadness and anger in the build up to this time. Autism Speaks, the initiator of the blue “awareness” campaign, is almost universally despised by autistic people. There are literally hundreds of articles and blog posts one could look up to learn more about that. Autism Speaks and “awareness” campaigns treat autistics as a group to mourn, their families as champions of living with the “burden” of autism, they use fear mongering “epidemic” speak, which defines disease, not neurological difference. They use the puzzle piece to denote a mystery and something missing. Their imagery denies there is a whole, complete child right before you, and furthers the harmful myth of a child who is less than human and can’t be reached, or who is hidden ‘underneath’ their autism…unaware of the world around them, unaware of how you are speaking about them. This is offensive. This is damaging. This is false.
Imagine being an autistic person and how unwelcome you feel this time of year when everyone is lighting it up blue to talk about the tragedy of autism, of your existence, to pity you and pat your martyr families on the back for living with autism…with…you. Disabled people do not want your pity and they certainly find it offensive and damaging to praise and pity families burdened by them. Imagine a month where everywhere you go there is the message to raise funds to “combat” autism, that is, find a cure; a cure to rid the world of autism…of…you. What’s more, the fear mongering and cure culture propagated by Autism Speaks has translated into quack cures that abuse and have even killed autistic children, because parents are desperate to extract the tragedy of autism from their child. Imagine what a culture of acceptance would bring instead.
Somehow World Down Syndrome Day is a fully fleshed out celebration of pride and joy and inclusion. How are we still stuck in the pity and oppression of approaching Autism Awareness Month like it’s a cancer awareness month? Can you imagine when that campaign is about YOU?
Autism Speaks and awareness campaigns also primarily focus on children, as if autistic children don’t grow up to be autistic adults. But they do. And while they are systematically forgotten, or worse, actively silenced, they are a growing force and they have something to say. Their words of resistance and pride are starting to break through. Autistics are asking you for ACCEPTANCE. Autistics are asking for inclusion, friendship, support and respect.
CHANGING TO A NEURODIVERSITY PARADIGM
Autistics are trying to steal away the campaign and re-appropriate it into something autism-positive by suggesting #REDinstead and #LightItUpGold for Autism ACCEPTANCE Month. If you would like to support autistic people you can listen to autistic voices. It is their right to lead the conversation.
The image below is a terrific cheat sheet to understand the difference between the traditional awareness campaign and a positive acceptance campaign.
A few more things autistics would like people to know…
Most autistics prefer identity-first language. (I AM autistic, rather than I have autism, or am a person with autism.) But a person should be called whatever they prefer to be called. It’s up to them.
Most autistics would like people to stop using functioning labels. They note that “high functioning” can denote a hierarchy in value, and is often used to deny accommodations and necessary services, and “low functioning” is disrespectful and used to strip people of their rights and presumed competence. An individual’s “functioning” also varies greatly over years, and even throughout any day and from task to task. It’s an oversimplification of an outsider’s assumptions about functioning day to day as an autistic, with potentially grave consequences.
Great sources to learn about autism from autistics (I have dozens more for anyone interested):
ASAN (Autistic Self Advocacy Network) https://autisticadvocacy.org
AWN (Autism Women’s Network) https://autismwomensnetwork.org
Thinking Person’s Guide to Autism www.thinkingautismguide.com
Being autistic is not all roses all of the time, but it’s a hell of a lot harder when people try to change who you are or pity your existence. Pay attention to the language used. My daughter needs me to make this world a better place for her, and she needs her mother to be positive about her life, and our life, and she needs to be embraced for exactly who she is and celebrated. All children need that. We have an amazing autistic daughter whom the world needs to accept because if they don’t they will miss the opportunity to be better together.
[image credit: MissLunaRose]