Six Years Later

Its November of 2017. My oldest son was identified as Autistic 6 years ago. I don't keep track of these days or call them "D day" or icky similar terms that I have seen. I just found paperwork from that time while looking for something. We knew A was/is autistic since he was an infant. I just knew deep in my heart  Maybe it was having babysat autistic children. Either way, I knew and remarked to my partner when A was 6 months old.  We read some about autism and my partner and I were certain then. We weren’t remotely sad about it. Why would we be? I have written about that multiple times because we were so confused and upset at the condolences we received.

Between 2012-2013, my other two children were identified as autistic.  First by us, then professionally in case they ever needed OT etc, they would have paper diagnosis.  I was identified autistic by myself a long time ago and via professional dx years back. We are a family of autistic people and we love our labels. We love being our authentic, free, stimmy, hiding in a quiet place, Autistic selves.

I began to be called or lumped in with “Autism moms”. It’s a term used by (frequently allistic (people who aren’t autistic) ) parents to identify themselves as parents of autistic children. never liked the term “Autism Mom”. I disliked that people were / are appropriating their children’s neurology.  I am an autistic parent.

I think self proclaimed "autism moms" believe themselves to be supermom. Super hero memes abound on pages about autistic kids. Pages where their lives are laid bare and the world knows about their potty habits.  A parent blog can be done respectfully, but there are a lot that are gross and exploitive.  Blogs and statuses that share about meltdowns, potty stuff, puberty and worse.  It is all very attention seeking. Parents seem to meld their own identity into their child's diagnosis and cannot seem to separate the two. Unless they are also autistic, their identity shouldn't include the term autism.

I frequently hear from people how “amazing” I am from people who find out, read, know that I have three autistic children.  Phrases I hear often are: 

“I don’t know how you do it!”

“God knew what he was doing when he gave these children to you!”

“It takes a special kind of person to parent 3 children with Autism!”
"Wow, 3? I cant even imagine"

These statements are made in FRONT of my children. Once a doctor said to me, "I don't even know how you get through the day with a kid like this." in *front* of my child. I was livid. My children hear these condolences. I shut it down sometimes. Others I have that delayed processing thing that happens to me and I freeze up.

How can I explain this to my children? The ableism that prevails and that society by and large sees us as burdens, tragedies. People to feel sorry for.  Parents of whom are super human. My kids will tell you and I agree that I am not a saint at all. I am just me, a flawed person doing my very best to be the parent all children deserve.  The parent I wish I had.

I parent my children with unconditional love and total acceptance. This is what all children deserve and what autistic or otherwise neurodivergent children need. I don’t deserve accolades for what I do.  When we hold parents of autistic kids on pedestals, we reinforce the message that autistic people are “difficult” to parent.  That our lives are harder. If anything makes life harder for us as autistic parents, for my autistic children, it is the ableism. It is the neurotypical dominant world that isn't built for people with brains like ours. It is the schools and public places that don't accommodate our needs at all.  A world that is too bright, too loud, that demands so much work on our part just to be able to get through a food shopping trip.

It is NOT autism that makes life harder. It is society's ableism that informs legislation which includes ABA or therapy instead of in home respite. It is in home respite that is well funded so the caregivers are well paid.  It is the lack of support for AAC. Schools that have never heard of ipad apps that thousands of people use to communicate. Its teaching the school's speech therapist about an ipad application that helps non speaking people communicate.

Ableism makes my life, and that of all autistic people and autistic parents more difficult. It isn't my children who make things harder. Not them at all. Not ever. I am not a saint. I am human. I work really hard to be patient but I am not perfect.  My children are amazing and perfect and I am profoundly lucky to be their parent. I mess up.  I say I’m sorry and we talk about it.  Parents of autistic children are not better or stronger and I am not a super parent.  I treat my children how I would like to be treated. This is what all children deserve.

I posted about 4 years ago with the theme “don’t say sorry” because I was so tired of being told how bad people felt for me. I hated/hate being told “I’m sorry” when people learn of my children’s neurology.  

It’s nothing to feel bad about. But society teaches this kind of ableist message that autistic children and disabled people in general are a burden on some level.  I am multiply disabled, severely chronically ill and I am autistic.  People say to my partner privately how hard this must be on him. 

Autistic children are not burdens. Disabled people are not burdens.  Being a parent to a disabled child doesn’t automatically make someone worthy of admiration. In fact, the rate of filicide is high and there are many parents putting their neurodivergent kids in 40 hours a week of abusive ABA therapy. Early Intervention is often unnecessary. Its pathologizing. Autistic kids childhoods don't need to be "intervened" on. . 

They are stealing their childhood because they think their children need this to learn things. They are sold a lie that autistic children need this therapy to be able to succeed in life. ABA is horrific and if you research you will find countless posts and first hand accounts of how traumatizing it is. People who had ABA frequently end up with PTSD because of it.

Maybe it was sold to the parents as “good ABA” and that it is "play based" and nothing like "that other" ABA. Perhaps they want their children to appear less autistic. They want them to stim less or differently. They want their child to fit in and appear less disabled. They think they can therapy away their child’s neurology.

This is incredibly hurtful and patently untrue. People who stop stimming because of therapy have been trained to repress their autistic joy. Their body's need to move in a certain way. This breaks my heart. My home is filled with the sound of joyful stimming and running, jumping children. Free autistic and multiply neurodivergent children.  

ABA was sold to us when my oldest was id’d as autistic. I was told if he did 40 hours a week for 5 years he would “lose his diagnosis”.   We of course refused.  We would not trade his childhood for hours of therapy. We didn't want him to appear less autistic or to be trained to act differently. There is NO such thing as "good ABA". Its all bad because it is rooted in behaviorism and the idea that autistic people as they are, are not acceptable. That we need fixing. Data collected on us. BCBA's who view us through the pathology lens.

I am an autistic parent to three autistic children. Self proclaimed "Autism moms" are co- opting their child’s neurology by using this phrase.  They are parents of autistic children.  They don’t need to tie their identity in with their child’s neurology so they can call themselves “parents” and not worry about using Autism at all, unless they are autistic themselves.  I don't know the mentality behind that phrase. Is it insecurity? Needing validation or for people to think they are super parents by virtue of their children's neurotype.

Neurodivergent people are not burdens.  Autistic people do not need fixing in any capacity.  We need to be accepted for who we are. To be able to stim freely and not have our movements repressed or conditioned out of us.  We need to be kept away from disrespectful therapists and "autism experts".   If a child needs help with something fine motor related, a gentle and kind OT can help.

My children have dyspraxia and dysgraphia so we did meet with an OT. At the outset, I kindly but firmly explained our views on ABA or ABA type approaches. I was clear that we did not want any bribery or anything of that kind.  If you need to consult with a therapist, please make sure the therapist is respectful and doesn’t use ABA.  Many speech, PT and OT practices use ABA without calling it that. The office at the local hospital had a BCBA there talking to the therapists and employees one day when I was there early. I was told it was "training".

When parents kill their disabled children, the way it is reported in most major news outlets is appalling and gross. They usually mention how "hard" the parents life was, quotes from friends or neighbors about the disabled child saying things about how "difficult" it was for the caretaker. Why is there sympathy for someone who murdered someone in cold blood, intentionally? Its because disabled people are seen as a burden, extra "work" and that people liken the "stress" of caring for an autistic child to soldiers with PTSD.

If the murdered person was not disabled, everyone would be outraged and have their pitchforks ready. The disability community is outraged and heartbroken every time this happens, and it happens a lot more than you may think. If you look up "Disability Day of Mourning", you will see the horrifying frequency with which this happens. Comments sections in stories about filicide are filled with sympathy, with "You don't know their life!" and "if you haven't spent a day in their life, you wouldn't understand!'.

Discussion of "services" begins. How the parents didn't have enough services. How there aren't enough services for parents. What types of services do they mean? Likely its ABA or respite of some kind. Is there more that can be done to support families? Probably, depending on the nature of the "support" Abusive therapies aren't support. Help with caregivers in the home is a support that many families can probably use.  

But the narrative is unfathomable.  Excuses given. Standing up for a parent murdering their disabled child, often in horrific ways.  Strangers who think the parent is being unfairly judged. Its appalling to see the support, both in the journalism reporting the story, and in comments sections, of a cold blooded killer. If a child was neurotypical, no one would mention the parents being stressed or overwhelmed. Excused cannot be made for filicide.

Autistic people are not burdens. We are not tragedies. My children do not need or want pity. They are happy, stimmy, free and need zero pity or fixing.  If someone tells you their children are autistic, or you meet up with someone who you just find out has an autistic child, treat them as you normally would. Talk to autistic kids in a non patronizing way and understand they may or may not reply. This doesn't mean we need "social skills".   As a family, we love to script and my older son tends to speak in a lot of scripts.

My children don't know yet that autism is seen in a lot of circles as an illness or disease. We have always taught them the social model of disability. They know that I am also autistic, multiply disabled, multiply neurodivergent and chronically ill. We love labels that help. Labels that explain feelings we've had for many years.

Six (eight really) years later, I am so glad that I found the words of autistic people. That I read and read and read. I've immersed myself in blogs and books by neurodivergent and autistic people. I co-founded a blog about respectfully parenting autistic / neurodivergent children.  I spend a lot of time talking to parents of newly id'd kids. I started a neurodiversity lending library earlier this year. I love talking about the neurodiversity paradigm and it is my long running passion.

We can flip the script. Talk about neurodiversity. Let your child learn about their amazing brains and if possible, find ways for them to be around other autistic or otherwise neurodivergent people. This can be done online if not possible in person.  Tell them about our rich autistic culture. About the history. Tell them how amazing they are, just as they are. Unconditional, whole, radical acceptance is the best thing you can bestow upon your autistic child.