Dear Autism Parents & Neurodiversity Critics
©Sharon daVanport
Dear Autism Parents/Neurodiversity Critics:
Each time my self-advocacy is called into question by critics of the autism/neurodiversity movement, I close my eyes & see my mother's smiling face. My mother accepts me for who I am; she "gets me" and that means everything! I often wonder if the autism/anti-neurodiversity parent activists who choose to criticize and verbally attack autistic adults realize that we are someone's child? Have these critics stopped to realize that their child will one day be us, an adult on the autism spectrum?
I sense that many of you who criticize the autism/neurodiversity movement are responding inappropriately due to the anxiety you have about the diagnosis of your child, and the overwhelming fear of not knowing what the future holds for your little ones. Not to mention the stresses of today, right? I mean come on, the meltdowns alone are oftentimes unmanageable, and the constant screaming from your spectrum child can be unbearable, right? (at least that's what I've heard some of you say: and guess what? My mother said the same thing. Yes, I understand.
I've got an idea: before deciding to take your anger out on those of us who are advocating for ourselves and attempting to educate our communities about the truths pertaining to adults on the spectrum, please remember this:
I am an adult. I am not 5 - I am 45. Do you honestly believe that because I've been on this planet for more than 40 years, matured through life lessons, and have learned to mask the socially inappropriate mannerisms which you equate with autism, then now all of the sudden I am not autistic? Seriously?
Do you assume my mother did not have the same challenges with me when I was 5 years old that other parents of autistic children today experience? Do you assume that my mother couldn't possibly understand how it is to be a parent of an autistic daughter due to how I present myself as an adult today?
Along with the blessings, my mother experienced numerous challenges parenting an autistic daughter. If you want to get down to the nitty gritty, wrap your brain around this: my mother was parenting a child on the autism spectrum before there was an available diagnosis in the DSM for Asperger's Syndrome. My mother was parenting me with zero supports in the schools and communities. Honestly, this conversation gets exhausting sometimes. More importantly, my mother would never, not for one moment think of treating any child or adult with the disrespect you demonstrate toward self-advocates.
And to my mother, I say this: Will I ever be able to express to you how grateful I am for all your support? Will I ever be able to fully appreciate the challenges and fears you experienced when I was a little girl? Will I ever grasp the gravity of your frustrations, and constant fears when you were walking knee deep in the unknowing of it all? How many tears did you cry when you did not understand why I struggled at the slightest touch, or when I screamed non-stop even when you attempted to comfort me; and how can we forget the almighty meltdowns!
Mother, there are no words to express the love and gratitude that I feel in my heart for the support and acceptance you continue to give me each day. Will you ever know the warmth I feel in my soul, and the happy tears I cry as I drift off to sleep each night, because my heart is overcome with the knowledge that I have your acceptance, love, and support in all that I do as a proud member of the Autism/Neurodiversity Movement?
Mother, if the autism/neurodiversity critics have taught me anything, they have surely taught me this: I hit the jackpot on the day I was born to you. I was blessed beyond my wildest dreams to have been born your daughter. Never will I take for granted these eternal blessings. I love you mother, ~Sharon.
Lovely letter, Sharon. Thank you so much for sharing it with us.
I suspect my mom is an Aspie herself. She didn't really see me as different or unusual, and she treated me the same as my siblings who are less affected than I am. As with your mother, I'm sure it was difficult, not to know herself and why she suffered. And yet to offer me the unconditional acceptance that she herself longed to experience. So your letter speaks to my experience as well. I feel incredibly grateful that I was born to my mother.
The consequence of lack of self-acceptance is what I experienced with my father, whose self-loathing (projected outwards as arrogance and perfectionism) created a toxic environment for my siblings and me. He was the counterbalance to the light that emanated from our mother. Yet, because my mother was there (or not too far away), we could recognize his challenges for what they were: the turbulence of a troubled soul. Thank heavens that my father is finally accepting himself and finding peace in his heart. That makes me very happy.
Suppression and shame toward what makes us irrevocably unique will lead to misery. That is not something to wish on our children. I admire you for the work that you do.
Hi!
I admire and applaud your courage to post this open letter. People need to hear your story! I think the respect and admiration you have for your own mother is wonderful. Your words to her are very touching and I am sure that she (and any loving Mom that sees a letter like this from their adult child with autism) will be proud and inspired.
As the Mom of two sons on the autism spectrum (10 and 3 1/2) diagnosed about 18 months ago and as an Aspie myself (not diagnosed until after my children were), I currently find myself advocating for my children and learning to advocate for myself. Because I appear to most to be "NT", I find myself often in conversations with other spectrum parents where they are open and embracing but then become immediately awkward if I share I am on the spectrum as well. (As such, I still find it very hard to share in certain settings.)
I so think it is imperative that women on the spectrum continue to speak out and share their diverse stories. I strongly believe there are way more of us out there than are diagnosed but as many form adult relationships and have our own children, self-realization will hit if they find their own children on the spectrum too. I LOVE LOVE LOVE this Autism Women's Network organization and am so happy I found it!
I believe in the empowerment and encouragement of those with Autism / ASD / Asperger's Syndrome and as a Mom with two kiddos that are more than two handfuls, I understand the daily challenges parents go through. I know what it's like going through life having a puzzle piece that didn't seem to fit anywhere. I unfortunately know what it's like to experience being taken advantage of because of not properly understanding social cues.
I look forward to a community where gaps can be bridged, educational resources can be embraced and people can come as they are and let their lights shine.
No-one ever said that having Autism was easy (well, no-one that I know) or that parenting children / adults on the spectrum was not an amazing challenge to embrace. In my opinion, embracing neurodiversity doesn't mean not healing and helping the medical challenges and co-morbidities that ASD people face.
Thank you again for your powerful letter! I'm new here at AWN and look forward to being part of the community.
Karen
Aspierations - Come As You Are ~ Let Your Light Shine!
Hey, Sharon,
Way to speak your truth, sister! I wish I had half your courage, but the fact is, I'm not strong enough to do the kind of advocacy work you do. I don't have it in me to be continually torn down by people while trying to do the seemingly impossible. Thank G-d that people like you do have the focus, the resolve, the toughness, and the endurance to fight for all of us on the spectrum. Not everyone realizes it yet, but one day they'll know what a friend autistic people and their families have in you.
Discovering AWN has been like having a life-preserver thrown to me when I was drowning in the indifference and sometimes the cruelty of the larger world. You've created a safe space for autistic people to be. Isn't that what parents of autistic kids want for them? I don't always agree with things that other members here say, but I learn something almost every day. Despite any differences of opinion that other members of AWN and I have, I never doubt the fact that we're all on the same side- that in the end, what we want is a better life for autistic people and the people who love them. Our methods just vary sometimes. Maybe some of the critical NT parents could learn something from us about overcoming cognitive rigidity.
Kudos to your mother! She did, without much support what every good parent hopes to do. She raised a person who knows she's loved. I for one, am grateful.
Sharon....balls, pure balls!
I salute you. Not many folks in this world care to articulate their feelings as clear as you did in the post above. I know exactly what you mean and can relate directly to your words. You have my respect.
I and the community we embrace has come under attack by a radical group of shit bags out for one purpose - to prove autism is a "Man-Made" problem. They try and discredit the aspergers portion of the spectrum for many reasons. Many will try and marginalize what you went through as a child to push a separate agenda(s). Some do not accept your voice because they do not accept you as a person. Others do not care what you say as compared to who you are and what you represent.
My reality [which is the only one that counts in my world] has you as a great leader, a caring person, and a strong woman..... a triple threat aspie!
As you have iterated on another thead, people can be toxic. Envy as one of the deadly sins is described as "sorrow for another's good".
Awesome, Sharon. Sadly, I believe that some of these people are just misguided and blinded by the glitter and glam of the Autism Speaks crowd.
As for the others, well, I think they are just unhappy people. Many of the would wish their child was different, no matter. You know, the ones who mourn their children aren't football stars or academic scholars.
My first dealings with online "support" groups was at a Delphi list where a mom actually starting stalking me online and posting mean things like " you may love your child now. wait...you'll hate him soon enough. We all do". I knew then, I needed to find like-minded people. So glad I have!
Amy
ya know, I talk with my own mother a lot about how frustrating it is that some parents think it's alright to be unaccepting of their child, or to attack Neurodiversity proponents. Sometimes, she's not even sure how they do it. Maybe her perspective is different because HER mother is a woman on the Autism Spectrum. I don't know.
I do know this- If my mother hadn't accepted ME, hadn't fought for and alongside ME, or had voiced the same sort of things some of these parents have, I would not be where I am now. Maybe I would have ended up in a residential placement, as was recommended many times. Maybe I would have been left to languish in life skills classes while the school district ignored my requests to access academically appropriate classes. I almost certainly would have been made involved in the Juvenile Justice system, if only on the basis that they were pushing a Zero tolerance on any sort of meltdown- they wanted to call the cops every time I cried or hit myself.
Or maybe I would have been one of the victims of the Pittsburgh doctor who was using chelation on ASD kids, and ended up killing a few. I have an age peer in the next town over from where I grew up whose mother did take her there. She was looking for a cure, and now has to wonder- what of her daughter's issues could be the result of this doctor's irresponsibility? Would her daughter have died if the doctor hadn't been stopped- like the other kids- or was the chelation propaganda right? Last time I saw her, she had a large scrapbook of every article on the doctor, his trial, and any malpractice cases. Comparisonnotes on Chelation kids and her own daughter's medical history.
Maybe I would have been put into a placement setting where they simply don't have the resources to teach above an 8th grade level. There are more places like this than you think, and too often they are ignored, or brushed aside with the implication that it is the students who are stuck at the 8th grade level, not the resources- that they couldn't learn above that.
As I've grown up, I've realized more and more how lucky I was to have the mother I did. We didn't do Chelation, or aggressive attachment therapies. My mother did not give into pressure to place me in a residential placement, and pulled me from my school district for 2 years (one was cyber school before it became efficient; the other was a private christian school) when the school refused appropriate educational placement and wanted to have the police involved in my meltdowns.
When I went back to the public school, my mom stood with me when I demanded to be allowed into Honors English classes, and helped me negotiate a deal that if I were to prove myself in academic classes- already a step up from the basic classes they were pushing because of behaviors and class room disruption in my record- I could go into honors the next year. When they had told my mother I would never graduate high school, she refused to accept it- and encouraged me to think not only of graduating, but of attending college.
Until I started to look around, I didn't realize or grasp just how close I had came to the fate of some of my peers. If my mother hadn't been accepting of who I am, or if she hadn't had the vision to see that I had my own potential, I could have joined them in their various hellish placements, treatments, and system failures. My life could be harder than it already is.
acceptance is a blessing.
Savannah Nicole Logsdon-Breakstone Director of Advocacy 
Have these critics stopped to realize that their child will be one day be us, an adult on the autism spectrum?
I do not understand this either. Our work can only benefit their children in the end. I think most parents want what is best for their children, but many are misguided and afraid and need somewhere to unleash their anger. Children from all ends of the spectrum will grow up and it is hard to understand how their parents would not want them to live in a world where they are accepted and have resources available to help them have a better life.
I think in part it is because they don't want to think of their child as being that different , one that needs accomidations (although help is OK). As long as they play it down they can have a nice, normal family. Now this only works from a high functioning asd standpooint,i hate to use this as a comparison, but it is like when a family member is dying and everyone pretends everything is OK. It's part denial, part hope, and part fanaticism. I don't agree with what they do but I can understand it, of course I've always been one to play the devil's advocate.
{{{Sharon}}} Hope you don't mind virtual hugs! It takes a lot of guts and stamina to do advocacy work. I commend you. I'd like to be part of what you are doing even in a small way.
You clearly understand and appreciate how lucky you are to have your mother accept you. She deserves huge praise as well. I know it's not easy to go against a community/society and love a child who is different but she did. Thank you accepting Moms everywhere. Can I borrow your mom for a while?
I think it's important for you to say out loud to those critics what you wrote here because it's crucial they understand how significant being accepted is to how one functions in the world. It makes all the difference. They may not like it and they may get louder but they will eventually think about what you've said and appreciate the truth of it, even if they never admit it out loud.
-M
That so few now dare to be eccentric, marks the chief danger of the time.
John Stuart Mill