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.

Unschooling and radical autism acceptance

Something that pushed me out of several unschool / peaceful parent communities over the last 4 years was the anti label mentality and the ableism.

By this I mean people who view autism as brain damage, vaccine injury or something to be cured via diet, supplements and removing certain foods. Of course the use of labels in these same unschool groups was everywhere. They had no issue with labels like highly sensitive, spirited, gifted, empath, and indigo or crystal child. These labels are used liberally.

Yet when autism, ADHD come up its frequently met with an anti label comment. "I don't want to put a label on my child". "ADHD is only for kids in school" Yet they had used labels many times in describing them. So the anti label mentality isn't about not wanting to label, it's about the stigma they have with disability. If you are ok with calling your child "highly sensitive" and "sensory sensitive", but bristle at the label "autistic", that's ableism.

Countless times I've seen parents post about their child and describe in detail what brings to my mind as autism. Then myself or others commented to this effect. Recommend an OT eval. Not for me to diagnose, but to raise the possibility and provide reading resources. I've been treated horribly for this suggestion and told that their child doesn't need a label. Despite the fact that they had already labeled their child (spirited, inquisitive, highly sensitive, empath etc), they don't want to think they may have an autistic child. If it was about labels, they wouldn't have used the terms they did.

There is nothing wrong with being disabled. There is nothing wrong with being autistic. I am autistic as are my 3 children and we are proud of our neurology. My Autistic label helped me understand me. I was dx in my teens with generalized anxiety disorder, social anxiety, OCD and ADHD. I spent decades wondering why I seemed to experience everything differently than those around me.

Lights were brighter, sounds louder, touch painful and neurotypical social expectations impossible to remotely understand. The word felt too much and I didn't fit anywhere. Fitting in now doesn't matter but as a child it crushed me to feel like I was broken and afraid to tell people how things felt to me. Instead I was labeled as a brat, overly sensitive, picky, difficult, weird. I tried. I mimicked what I saw other kids doing to try to just be invisible.

Over the course of 3 years, all four of us were identified as autistic. I felt so much relief to really understand myself. I had thought I may be autistic for some time. A psych in my 20's told me I fit all the criteria yet had "too much empathy" so they couldn't dx me. In my 30's I felt sure of it as I read about autism when my son was a baby and we knew he was autistic. I found community with other autistic adults over the last 5 years and read the words of other autistic adults. My children know and hear the terms autistic, neurodiversity, ADHD and so on.

We have to eliminate the stigma around autism. We have to stop medicalizing it and viewing it as a disorder or something to be fixed. Autism isn't a disease and we don't want to be cured. It's a neurotype and nothing to be ashamed of or afraid of.

Peaceful parenting communities are founded in acceptance, consensual living, body autonomy and respect. Yet I notice that the anti label thing persists in those too. That parents peacefully parent their neurotypical children but send their autistic child to disrespectful therapies. That they give food freedom and unlimited screen time to their non autistic children but say their autistic children cannot self regulate.

Of course there are exceptions. I have met some amazing friends who are autistic or otherwise neurodivergent peacefully parenting their neurodivergent children. I have met non autistic parents who reject the medical model of autism and embrace the neurodiversity paradigm.

Yet a place in the unschool community eludes of frequently. We won't hang out with people who equate neurodivergence with brain damage and believe organic or raw vegan diets can "cure" that. Neurology cannot be cured. It shouldn't be.

I love my labels- parent, autistic, non binary, introvert, sensory processing disorder, chronically ill, Star Wars fanatic and many more.
We are a radical unschooljng family. We have always been punishment free and my children have unlimited screen time and food freedom. Autistic children can be parented this way. Neurodivergent children can and should be parented with the same respect and acceptance. Many of us are living this life and it's imperative that people understand autistic children don't need to have boundaries their siblings don't have.

People label things and other people all day. If you are ok with most descriptors, but then hate labels when the topic is autism or ADHD, that is internalized ableism. It's likely not that you are anti label, it's the stigma of disability. The use of other labels shows that you aren't against them as a whole.

The stigma surrounding disability needs to be removed. I've had my own internalized ableism to work through as a person with psych disabilities who was shamed for being myself. I spent so much of my life feeling bad or wrong, that it took time to embrace who I really am. The freedom that came with that has been amazing.

Once people see being disabled isn't a bad thing, they can accept their children and knowing their neurodivergence will help them support them in the way they need. Pretending a child isn't autistic or neurodivergent just because you dislike labels isn't helping them.

Autistic children don't need ABA, disrespectful therapies or to spend their childhood in therapy rooms instead of being kids. They need acceptance. Total, radical, unconditional acceptance. To have sensory needs met. To find Autistic community that's here and out there that accepts them fully.
We reject the notion that there is anything wrong with disabilities. That there is shame around the term Autistic. Autistic children deserve the same peaceful parenting approach. Right as they are and not for who you wish or hope they will be.

Giving Children Freedom

While at the eye doctor for my daughter, we were in with the doctor's assistant first. She asked S if she was wearing her glasses. S had asked me in advance if I could talk at the appt, because she was too nervous. I said no, she was not wearing them because she said they hurt her face. S played on the iPad while we waited on the doctor.

The nurse turned to her and said "If you don't wear your glasses, Mommy is going to take away the iPad and you won't be able to use it anymore". S began turning red and looked at me, confused. She has never been punished or had stuff taken away. I said to the nurse and my daughter "No! That is absolutely not true. The iPad is for her to use and I will not take it away. Please don't threaten my daughter and please don't tell her I will do things I've never ever said I'm doing". She was taken aback and said "most parents use things their kids like to get t hem to do things, especially kids with autism"

This kind of stuff happens all the time. Thankfully the doctor himself is wonderfully kind. I explained what happened with the threat and he wasn't happy about it. He talked to S at length and she will be getting new glasses that fit better with a time period to return them if she doesn't like them. We are trying to avoid a pending eye surgery she likely may need.
A month ago at the dentist with S, she got her teeth cleaned for the first time. She is 8 and wanted to have a cleaning. She was curious. I spoke to the dentist and she let my daughter steer the flow of the appt. Some things were skipped because of the noise or smell. S's twin brother A was with us. The hygienist asked "has he had his teeth cleaned here?" I said no (he doesn't want to have his teeth cleaned).
She said she has some extra time if he wants to try.
I ask A if he wants to have his teeth cleaned. He refuses the cleaning, but offers that she can look at his teeth in his little chair across the room. He doesn't want to sit in the big chair. The dentist tries to look at his teeth but he is wrapped up in a game he's playing. The hygienist says "put the iPad down or mommy will have to take it". My son begins to sob and says "no, mommy won't. I want to go home!" I told the hygienist that's not what we do and don't threaten children ever.

AGAIN- someone is trying to "discipline" my children
AGAIN- someone is trying to take one of my children beloved possessions as retribution for my children not doing something they want.

**My children have full body autonomy. This means

- if they want to skip a bath they can
- if they want to take a bath by swimming or getting sprayed with a hose, they can. We've used little wading pools in our kitchen
- my son can have very long hair because it's HIS hair and his choice. People can and have commented dozens of times. Those people don't matter. Kids choose about their own hair. Full stop.
- if they don't want to brush their teeth every day, they don't have to. A and S usually choose to but sometimes not. It took a long time for them to want that and we never pressed.
- if they want to shave their head, they can
- if they want to grow their hair long, they can
- if they don't want to hug someone or say hi, they don't have to
- they decide who touches them and what happens to their body (only exception being medical things that are necessities. My children have some medical diagnoses that require maintenance. Sometimes they need bloodwork, tests or hospitalization. We do the minimum and keep it as respectful as possible)
- these are only a few of many freedoms my 3 children have. All children can have these freedoms!

It is really confronting to see families living in a way that is so different to the way you do. The way we live now is nothing like how I grew up. It's like the absolute opposite of how I grew up. Our family is punishment free, unlimited screen time, food freedom, radical unschooling, we respect body autonomy, children are treated with the same respect as adults. They are people now, and have rights. It doesn't mean things are perfect. We resolve our problems democratically. 

My children know their things are theirs and won't ever be taken from them as payback for doing something we don't like. As much as people like to talk about "real world" and "natural consequences", most of what they are doing is arbitrary, disrespectful and not natural at all. A natural consequence is my child adamantly not wanting to bring a coat somewhere and then being chilly. (Usually I bring extras)

There are many who say this type of living "doesn't work" for autistic children. I am here to say that is patently untrue. Our family is autistic. I have three autistic children who thrive in this setting. They don't do a single therapy. They don't have social stories for everything. They don't have a strict schedule. Our days have a natural flow to them that we didn't force, but happened on its own. Autistic children deserve a childhood with little to no therapy.

My children do not need to be threatened into compliance. Problems can be solved with discussion and mutual respect. No fear or retaliation is needed.

De-schooling: screen time

So many people do not believe that "unlimited screen time" will work for their family. I received many messages following my last post to that effect. It works in my home and it can work in yours. I believe that the people who say that their kids would never set down the iPad or never stop watching tv don't understand the process.
It is crucial to not have anxiety surrounding screen time. To not have value judgments or click bait articles about "digital heroin" or other nonsense in the forefront of your mind. You must let go of it for your children to be able to learn to self regulate. If they can sense you are anxious about the time they spend playing minecraft, they will feel this anxiety. Most likely if you do have some negative feelings about screen time, your children are picking up on this.
Children who have had limits on television, computers, gaming, iPads or any other kind of media are used to it being monitored and controlled. If you change to unlimited screen time, there will be a period of time where your children may be on their iPad/tv/Xbox etc 24/7. They need a period of "deschooling". This means a time where they are allowed to transition from having their screen time controlled to making their own choices around it.
During the de-schooling phase, children should have unlimited access to their tablet, computer etc. In our house it's tablets, some families are gamers.
This means full access to the tablet (s) and charging them so they can have continued use of them. This means not commenting about how long they have been on their PlayStation or how nice it is outside. *Trust the process*
Over time, your children will see that there is no longer a timer dictating when and how they can use screens. That no one will be turning off the tv after 30 minutes or taking away their tablet after an hour. That they now get to decide if and when they use screens. If you are telling your children that it's bad for them or that they should be reading / playing outside instead, you aren't letting them deschool or learn to self regulate.
It is hard to let go and trust if you were raised with control or to believe that you could not be trusted.
Children can sense the anxiety surrounding this and will not be able to self regulate. They will worry that you may change your mind and go back to controlling their usage. Reassure your children that they decide if, when and how to use screens. (Obviously families decide what is appropriate in terms of show / game ratings etc)
Over time your children will know that they can set the iPad down and it will be in the same place when they come back to it. Self regulation takes time. Especially if they are used to having it monitored by someone else and not making their own choices.
We have never had limits on screen time in my house. We didn't have an iPad until my older children were 4 because that's when it was gifted to them. Prior to that we did have tv on and watch some movies. My children spend many hours on the tablet some days and different amounts others.
When my kids seem restless or in need of movement, we talk about ways to meet those needs. Do they want to do something else? Should we go to the splash pads or pool? Sometimes a trampoline park. Others a walk around the neighborhood with the dog to check out construction vehicles.
We have a mini trampoline inside and a swing they use to fly across the room on. They frequently jump on the trampoline while they watch tv. They use the iPad then come back to parkouring on the furniture. They know no one will take the iPad away. It was a gift to them and it's not for me to decide that outside = better, therefore I have to exert control over them.
Empowered kids are amazing to see. My children are kind, wise and have a strong sense of justice. I'm blown away by the conversations we have. How they think critically about everything. I watch movies or shows with them. We talk about the characters. They ask me questions. They comment how a character wasn't being kind or used a word that isn't nice (ableist language isn't used in our home ) They trust me and know I have their best interests at heart. They are my best friends and I admire them a lot. I believe parents can be friends and should be friends with their kids.
For those who say this doesn't work for children who are autistic, have ADHD or are otherwise neurodivergent, I'm here to say it does. My children and I are all autistic. We are multiply neurodivergent. I see the fruits of trust every day in my home. There is so much freedom in trusting children. They hold my hands in parking lots, they check with me before watching something if they aren't sure if it's appropriate and they understand house & community safety rules. They don't need to be controlled. The reasons they follow those rules are because I explained. It makes sense. It's not "because I said so".
To add: YES! it can take a long time. So many parents tell me it didn't work but they gave it only a few weeks. Or were guilting their kids. I also believe in valuing my children's interests. So if they have unlimited screen time and still want to spend a lot of time gaming or on a tablet, that's ok too. The goal is for them to choose and not be controlled. It's not for them to make the choice the parent wants. (Ie if they want them to use the tablet less or be in nature more). It's about choice and trust.
It works. It works for autistic children. It works for neurotypical children. It just means letting go and trusting the process and more importantly your children. Let them know you trust them. Give it lots of time if needed. Deschool. Let go of control. Then watch what unfolds