Wednesday, April 4, 2018

What is Autism Acceptance?: The “You Keep Using That Word. I Do Not Think It Means What You Think It Means” Edition

I have talked before about the differences between “autism awareness” and “autism acceptance” but I will give you the (somewhat) shorter version real quick:

“Awareness” is lazy.  It requires no action.  It is rooted in ableism and done for non autistic people at our expense.  “Awareness” is self narrating zoo exhibits and violations of privacy and dignity.  “Awareness” is never and has never been for autistic people. “Autism Awareness” hurts.  

In 2011, autistic writer and advocate Paula Durbin Westby started Autism Acceptance Day and Month as a direct response to the harm that was caused by “awareness” initiatives.  Autism Acceptance Day and Month is a celebration of autistic people and autistic culture. It also speaks about ways to create a better world for all autistic people. It is about taking action to change the conversation about autism in our homes and communities.

And in the last few years, I have noticed that more and more people are using the word “acceptance” while still rehashing the same tired, ableist and offensive “awareness”.  Like so many allistics before, they are capitalizing on the ideas of autistic people and changing it to suit their needs. And calling your shitty thing something that isn’t shitty but still actively being shitty is not autism acceptance.  

Here’s the thing, I can call myself a tall person but that doesn’t stop making me be 5’2.   

And words mean things.  

You cannot call yourself an advocate for autism acceptance while speaking over and for autistic people.  If you use “acceptance” while promoting things that harm us such as ABA and other compliance based therapies, posting humiliating and private information about an autistic child or adult without their consent, while using functioning labels and having zero understanding of  or even willingness to learn about the neurodiversity paradigm, then you are not actually advocating acceptance. You are making as much sense as 5’2 me trying to convince you that I am very tall. And you’re still hurting us.

There are many, many misconceptions about what autism acceptance means and who it is for.   And part of that is because of people using words that actually don’t mean what they say.

Acceptance is:

  • Listening to and making autistic voices a priority in any conversation about autism
  • Not insisting that those voices use spoken language
  • Listening to autistic people even when it challenges what you think you know about autism
  • Knowing that functioning labels are useless, ableist and harmful & refusing to use them
  • Understanding that autistic kids grow up and become autistic adults and we don’t stop being autistic and needing support and accommodations
  • Presuming competence
  • Not making assumptions about the challenges and abilities of an autistic adult because they don’t act exactly like a five year old autistic child you know.
  • Advocating for  inclusion in schools, communities, places of employment and beyond
  • Respecting the privacy and dignity of autistic people, including autistic children
  • Amplifying autistic voices, taking a back seat and passing the mic
  • Knowing that being proud of who we are and celebrating autistic people and autistic culture is not the same as ignoring our disabilities and challenges.  It is in fact vital to challenging injustices
  • Recognizing ableism in all it's forms and then confronting it
  • Take all of this, learn from it and use your voice to challenge others and to fight for change

If you are not doing these things, then you are not practicing autism acceptance.

Because acceptance is not passive.  

If you say that you are advocating for acceptance, then you need you to show up and do the work. Create a safer and more inclusive world for all of us. Advocate for our rights. Treat us with respect and dignity.  Do not tokenize or use us to further your agenda. Work with us instead of against us. We need more people who actually want to do the work and if you’re not ready to show up, then stop pretending that you are.  

image is two cartoon narhwals on a dark teal background. 
The top left is a green narwhal with a frowning face. 
The bottom right is a purple narwhal with a happy face. 

Text next to the frowning face narwhal reads: 

"Autism acceptance is NOT: 

no help or support

only for some autistic people but not for others
ABA/Compliance based therapies
using functioning labels
just something that you say"

Text next to the happy face narwhal reads: 

"Autism acceptance IS:

recognizing that autism and disability are part of human diversity

understanding that autistic ways of being are okay
finding supports and accommodations that help me be the best autistic person I can be 
working with me instead of trying to "fix" me
celebrating and being proud of who we are as autistic people
something that you do

Thursday, February 15, 2018

I Don't Think They Really Love Me

This is a hard thing to write. 

But I don't think that many people really love me.

They claim that they do.  They tell me I am great and they love my sense of humor, or my artistic abilities or my way with words.

But when it really comes down to it, they don't really love me.

I see how they blame "mental illness" and disabilities like mine for violent acts.  They will make me a scapegoat with zero facts to back it up and not even care that it's  just not true.

I hear them talking about a "mental health crisis"  and wondering what to do about all these crazy folks!  I hear how they let their friends who say hurtful and ableist things slide.  They don't want to take sides, but they already have.

And they know I am one of those crazy people.   I am not shy about it.  I claim my neurodivergence!  Some even say I do it too loudly.   I have multiple psychiatric and developmental disabilities.  I have some of the "scary" ones.  Dissociative disorder!  I shouldn't be able to own a gun.  Not that I want a gun, but people like me are dangerous.  So they say.  They don't care about the violence done to me by the supposedly sane people around me because I don't conform and I don't comply.  That's not violence because it's for my own good.

They talk about "overcoming" disability or neurodivergence.  When I say that you don't overcome who you are, I am being negative.  I am letting my "mental illness" win!   Because being happy with who I am, that's unheard of for someone like me.

I see how they love my spouse, all the parts of him.  He's "normal".  I see the things they don't think I see.  Lamenting that he has to put up with someone like me.  He couldn't possibly love those uncomfortable and messy parts of me, could he?  I see how they feel sorry for us that my child has inherited some of my disabilities.  They don't think I should have had children. 

They say that our son is great.  He's funny and brilliant and beautiful and amazing.  They like that, but they don't like the parts of him that don't fit into a box.   And I see this.  I know this.  So does he.  He feels it all the time.  It hurts.

He hears them saying that they love him, but he feels that love has so many conditions.   It's something I have felt my whole life too.

I hate that he knows this feeling.   He does not deserve their half assed "love".   Neither do I.

So, I don't think they love me.  Not when they are talking about "treatments" and "cures" and bringing back institutions (which, by the way,  have never left.  Pay attention.)

I don't think they can love me if they want to debate my rights.   This is my life.  This is not something to "agree to disagree" about. 

I don't think they can love me if they want me to "overcome" the things that make me who I am.  The things that are hard for me?  I did not cause them.  I did not make them happen.  My brain wasn't built for this world but I am spending the time I have trying to fix that for my son and for all the people who come after me.   I will change this world, even if it's just a little bit.   But I can't do it alone and I can't do it when everyone keeps insisting that who we are is broken, is less than.  We are not problems to be solved in order to earn your love and acceptance. 

If you loved me, if you loved him, you would believe that too.  You would know this.

They sometimes say "Oh, I'm not talking about you, I'm talking about THOSE people."

I am those people.  Those are MY people.  We are the same.

I really don't think that I am asking for too much.  If you think I am, then you don't really love me. And it hurts the same, even if I've known this all along. 

Tuesday, October 31, 2017

I'm Tired of Asking You To Consider My Humanity

TW: ableist language 

To all of my "progressive" friends.......

I'm tired of feeling like I did something wrong when I say that you should not compare the people that you disagree with to those with psychiatric or intellectual and developmental disabilities.  I am tired of constantly having to defend my existence to those of you who claim to be my friends and family.   

You are free to use whatever ableist language you want.  I am not here to police your words.  But your words have consequences.  And one of the consequences of your choice to do and say these things is that I will think you are an ableist and I will know that you are not safe for me or my kid.  And those things are not my opinion.  They are facts.  You are not safe for us if you make us have to defend our humanity.

If you think it is okay to call someone a "moron" and "idiot", I will know that you equate the value of human life with IQ.   I do not have a high IQ.  I have been called the R word and "borderline" by teachers and professionals growing up.   I am learning disabled.  I am developmentally disabled.  I am autistic.  I am not a bad person because of these things.  My friends with intellectual and developmental disabilities are not bad people because they are not as "smart" as you think that you are.  Stop using us as your scapegoat when what you really mean is "this person I am talking about is an asshole and I disagree with them."  

If you call someone that you disagree with a "psycho" or "bipolar" or "borderline", I will know that you think my life has less value because I am neurodivergent.  I can list all the things I've been diagnosed with over the years, but I want to keep this short.  I have said before that I am "neurodivergent as fuck".  I have confused and annoyed therapists when they are supposed to be helping me because my brain works in ways that probably give them more questions than there are answers.  I am "mentally ill" by your standards.  I am one of those crazy people.  These things do not make me a bad person.   These things are not why I make mistakes.  These things are not excuses when I am less than stellar at human-ing.  

I am tired of the fact that the longer you blame people like me, the longer these problems of injustice and inequality will exist because you are ignoring the fact that we are all complicit to some degree in upholding oppressive systems.  The root of the problem is not found in the existence of neurodivergent and disabled people.  

I mean, when you fuck up, do you blame your neurology?  


Then stop blaming  mine.  

I am tired of feeling guilty because some people don't like that I ask them to consider my humanity and the humanity of so many others who don't fit into your narrow and incorrect view of what makes a good person.  I am tired of worrying about upsetting my friends by asking them to not be a jackass to people like me when trying to make a point.  I am tired of feeling like it's my fault that I lose friends who think that the freedom to call people an "idiot" without consequence matters more to them than me. 

I am not asking for perfection.  I am not expecting that of anyone and I would be a hypocrite if I did.  I did not grow up in a fucking vacuum.  I have absorbed these messages about ableism and human worth just like everybody else.  I still mess up.  But I try to do better.   I just want you to consider for a moment that maybe you need to do better too. 

Thursday, October 19, 2017

Don't be an "Autism Parent"

If you are the parent of an autistic child, do not be an "autism parent" who makes your child's disabilities and challenges all about you.   If you are one of those "autism mom" or "autism dad" types who thinks that you do not deserve an autistic child, then you are probably right because you don't deserve your child.  You don't deserve to be a parent if you cannot love and accept your children for everything that they are.   I know that your kids certainly don't deserve you.  

Someone whose blog I will not link to because they posted private, humiliating information about their children with pictures wrote that they do not want to be an "autism mom" anymore.  Well, don't be.  Get the fuck over yourself.  You are the only one who can stop being an "autism parent".  Your child cannot stop being autistic but you can stop being an ableist at any time.  It's really pretty simple.

Parenting is hard.    When parenting a disabled child seems more difficult, that is not the fault of the disabled child.  And parents really need to stop treating autism as if it's a behavior that your kids do at or to you.   

If you don't want to be an "autism mom" anymore, imagine how your autistic kid feels about it.  If you don't want to be an "autism parent" anymore, then don't be.  Stop.  Start being the parent your autistic child deserves. 

The following is my response to the author of the blog that shall not be named: 
The day started when I cried for my “autism mom” because the world is a scary and overwhelming place to be when your brain processes sounds and touches and smells so differently from most people. 
I wish my “autism mom” would not tell people about my most private and embarrassing moments when I need her support the most. 

I don’t want to sit on the couch with a parent who is annoyed and angry that my brain races and is on high alert so that sleeping sometimes seems impossible. 

I don’t want to have an “autism mom” who only wants me to speak when I am able to communicate in so many other ways. But she will not listen. I want an “autism mom” who does not resent me for having more complex needs than she understands. 

It is so hard to love someone who wishes you were not yourself.

I want a mom who has fun with me instead of turning everything into therapies and “teachable moments”. 

I want my mom to know that I am valuable and have every right to be included with everyone else. 

I want my “autism mom” to listen even when I do not communicate with spoken words.

I want a parent who presumes competence and believes that with the right supports, I can do so many things. I want a parent who does not resent me when my disabilities make doing some things impossible. 
I am tired of missing out on my childhood. I am tired of my “autism mom” telling the world that I have no value and am too hard to love and my needs are too great as my autistic self and then being surprised when everyone follows her lead.

I don’t want an “autism parent” anymore.

I am tired of being forced into situations that are too overwhelming and not being given the tools to manage sensory overwhelm or advocate for myself when I have had too much.

I am tired of the never ending judgement, the bitterness and the horrid things my “autism mom” says to other people about me.

I am tired of being subjected to therapies and interventions that seek to make me a non autistic version of myself. I am tired of forced compliance and being rewarded for pretending to be a version of myself that hurts. 

I simply cannot comprehend how society could ever break my heart more than not being accepted by my parent. 

I am tired of people having meetings about me, without me.

I am tired of being in a hostile sensory environment and being punished for not being able to handle it. 

I am tired of my “autism mom” fighting autism instead of confronting ableism. 

I don’t want an “autism mom” anymore.

I don’t want a parent who cannot appreciate my gifts and only focuses on the things that are harder for me. This is an adult woman who expects me, a child, to have the tools to navigate a world that is not set up for people with my kind of brain. This is an adult woman who tells people that I have the mind of a toddler and thinks that if I need intense supports now and when I grow up that my life can’t have value. 

Who would want that for a parent?

Today, and every day, I don’t want an “autism mom”. 

The problem is that I have no choice because only my “autism mom” can decide to love me, accept me, and treat me like a person who belongs and who will love me unconditionally, even when I am not the kind of child she expected to have. 

Tomorrow is a new day and I will still be autistic then. I can only hope that my “autism mom” can love me like I deserve.

If you don't want to be an "autism mom" anymore, then don't.  I promise that your kids don't want you to be one either.   

image: green background with black text that reads: "If you don't want to be an 
"autism parent" anymore, then don't be.  Stop.  Start being the parent your autistic child deserves. 
We Always Liked Picasso Anyway

Thursday, April 13, 2017

So, My Mom Died

CN: death of a family member, talk of child abuse

I'm going to be talking about some real life stuff that I am going through.

One of the things that I tend to do when a big thing is happening in my life that I don't want to deal with is to get really busy.   I feel like I have been incredibly productive the past month.  I dug out the place for our garden and have been working nonstop in the yard.  I have been asking people if I can do graphic design stuff for them for free because I am running out of ideas for what to make for the library's social media and other places where I volunteer.  We are doing tons of home school projects and painting, making elaborate meals and having fancy cheese parties with my kid.... and basically all the things to take my mind off of life.  And I pushed and pushed until I couldn't anymore.

Last month, my mom died.  And I know it is silly, but probably something a lot of people have thought about their moms... but I thought she would be around forever.  We weren't particularly close, probably in the last few years was the most we have ever talked.  A few years ago she called me from Ohio and said "I know I wasn't the perfect mother...."  After that, we talked about once a month or so.  We'd talk about how we wished I could afford to fly home and visit, and she'd ask about my son and send him cards or the occasional check.  It was always weird though, because for most of my life I thought she did not really like me.

I think that these things were her way of saying she was sorry?  I think so.  I hope.  I don't want to get into all the details of my fucked up life story, but there was abuse.  I don't think my mother knew how to handle an autistic child, (or even an allistic one for that matter).  Especially one who did not have a name for what made her so different and defiant and frustrating.  One of the things we talked about was my chapter in the AWN book "What Every Autistic Girl Wishes Her Mother Knew", because I did not want to hurt her feelings when she read it.   She was really excited to read it and would check the website all the time to see if it was ready and finally for sale.  I told her that I would send her one of my copies and that was the last time we spoke.  I never made it to the post office.

On a Saturday night, my youngest sister called me, hysterical and saying that my mother was found unresponsive.  Later, we found out that she'd had a massive stroke.  The next night I was on a plane to Ohio.  I borrowed money from my in laws to buy the tickets and my amazing friend Court crowdfunded that, plus hotel costs and more so that I would not have to worry about paying it back while also going through a crisis.

I did not recognize my mother at first after I dropped everything at the hotel and raced to the hospital.  None of my sisters were in the room when I got there, so I had to look at her chart to make sure I had the right room.  I held her hand and told her I was there and apologized for it taking so long.  I told her that F was there and needed to see her, and she started to cry.  The doctors told me it was a reflex, she could not hear me....and I know people will think I just wanted her to hear me, but I do believe she could hear and sense us, at least the first few days I was there.   We were never the kind of family who said "I love you". (That is probably why I drive my son nuts saying it all the time to him now.)  In fact, I can't remember one time in my entire life when my mother said she loved me.  I like to think she did in her own way.  I told her that I loved her and she started to cry and cough some more.   I asked her to please wake up, I had her copy of the book.

Honestly, my time in Ohio was such a blur.  And F, he was so wonderful. God, it must have been so hard for him to sit there day after day in a hospital, later the hospice and see me so upset.    I have some pretty bad ass lifelong friends back home though, and many of them volunteered to sit with him, take him to McDonalds, play with him and basically try to give him a little bit of normal, as much as they could under the circumstances.

After the first day, the doctors told us there was no brain activity other than in her brain stem, which controlled her reflexes like breathing.  She was adamant after my dad died that she would not want to be kept alive with a feeding tube or ventilator.   We knew her wishes, but I wanted to be sure.  I know you can't be 100% sure in these situations.  But I kept asking "are you sure this is it? nothing can be done?"   Nothing could be done.

My mother was transferred to hospice but there was no room at the hospice house because she wasn't in severe distress.  After some drama when we got to the other place, which was a nursing home, where they didn't even KNOW she was getting hospice care, we managed to yell, cry and scream our way into a private room. (seriously, they were going to put her in with four other people!).  I could not leave her there.  I know what nursing homes are like.   My youngest sister spent nights there and I spent the day there.  At times, my friends, who had known my mom their whole lives practically too, would sit with her so that F and I could get a break.  But I was terrified to leave.

She was there for five days.  It seemed so much longer.   F would entertain himself on his iPad while my (adult aged) niece and I sat with her.  My sisters and I decorated her room with things from her home, letters from my dad when they were dating that she had saved, pictures, her dirt from Ireland.  She had a bag of dirt from Ireland that she carried with her.  I don't know why, but she talked about her Irish dirt on more than one occasion, so we brought it.  I read her my chapter from the book. I don't know if she heard it, I hope she did.  Because I said in my chapter that I knew she did the best that she could, and I think she did.  My mom was not really the product of a happy home herself....I don't think she knew how to be a mom.

My niece brought a big bag of my dad and mom's letters to each other from when he was stationed overseas and they had just started dating. One thing that I can say for my parents is that they loved each other and their love was so amazingly strong.  They were best friends.  The last 15 years since he died were just so hard on her.  She seemed so lost, even more than before.  My niece and I read the letters, we laughed at some of the stuff we didn't know before.  We cried at some of the stuff too.  It was hard but it was also beautiful, and I am glad we were together.

On the fifth day, waiting for my nieces and my sisters....I felt my mom's head and she was so hot.  I called a nurse, but the nurse was on break.  An aide came in and she knew.  She just knew and she took me aside and asked if she could give me a hug, which normally getting hugs from strangers is not my deal...but I needed that.  Then, mid hug she started to cry and she said "I'm so sorry, this is my first day back after taking care of my own mom who just died of breast cancer and I just feel so much for what you are going through because I was just in your place."

So, then we had a good ugly cry together.  She left the room when the nurse came in and I went to hold my mom's hand and explain what the problem was to the nurse....and then my mom died.

It was all foggy after that.  My son, he did not really know his grandmother at all. He was sad, that's for sure....and before we went to bed that night, he said "I'm so sorry for your loss, mom." and gave me a hug.  I went to put his laptop away and he had googled "things to say when somebody died".

He is the best kid.

As I said before, I do not think my mom knew how to be a mom. Sometimes I get really angry at the things that I went through as a kid.  I mean some of the things she did to us were incredibly cruel and fucked up.  But she loved her grandkids.  She loved being a grandma.

After she died, so many people told me how they remembered the things my mom did for them.  She and my dad ran a food pantry, a free meal, they helped people.  They liked to help people.  And they never asked for credit or acted like they were saviors.  I think they knew how much poverty hurts, because that's where we lived too.  So many people told me things about her, how she helped them when they needed it and did not judge them.  Friends who needed a place to stay were always welcomed in our home.  People remembered her take no shit attitude but also her kindness.

And I do think that my mother was a good person, even if she was an imperfect mom.  I used to feel a lot of anger.  And probably, I will still feel that at times because it's a lot to unpack.  Now I just feel sadness.  I sometimes wish she could have loved me like she loved other people.  I used to think that she didn't love me at all, but maybe she did, in the only way she knew how.

I saw my parents talking about injustice a lot when I was growing up.  I saw how they treated people and always wanted to help, how they really wanted to change the world.  I think maybe some of that has rubbed off on me a little?  I hope so.  Maybe that is the way I need to remember her now.   For her compassion and for her hope that the world could be better, be more fair.  And also for her take no shit attitude.  Because I like to think that I got a little bit of that from her too.

image is my mom, an older blonde woman with glasses holding baby F on a picnic bench

Monday, April 3, 2017

Revolutionary New Autism Treatment

We hear so much in the media about the “cost” of autism. Thanks to fear mongering by groups such as Autism Speaks, we know that therapies like applied behavior analysis - considered the “gold standard” of autism treatment - can cost in excess of millions and even billions of dollars over the autistic person’s life span. I don’t know about you, but I don’t have millions of dollars lying around to fix my kid!

Fortunately, I have found an alternative that will COST YOU NOTHING, is easy to implement, and won’t cause that darn PTSD so many autistic people develop from compliance-based therapies.

As the parent to an autistic kid, we want to do everything we can to make sure they have the best chance at a happy, successful life. Thanks to my revolutionary new autism treatment, your children CAN have all those things!

While most autism treatment programs focus on pathologizing every goddamn last thing your child does, the NBAA™ method allows your child to relax and enjoy their childhood. Yes! That is a thing… autistic children being allowed to just be kids once in a while! And with NBAA™, this is not only allowed, but encouraged. By shifting your perspective from being your kid’s therapist (who must create “teachable moments” in every situation) to one of a parent who is able to just enjoy their relationship with their child, you can create a loving bond which may look different than what you expected but is every bit as beautiful and real.

This program will allow you to:

- establish a warm and mutually loving relationship with your child
- give your child the tools to avoid developing PTSD
- instill healthy self esteem in your child and the ability to form loving & trusting relationships based on mutual respect with others
- not be your child’s 24-hour-a-day therapist and to refocus your energies on just enjoying your relationship with your kid
- confront ableism, instead of trying to constantly battle your autistic child like some creepy-ass WarriorParent™
- teach your child that their bodily autonomy is non-negotiable, thus making them more confident and better able to recognize and avoid abuse
- recognize that autism is an inseparable part of who your child is and that is okay.
- find supports and accommodations which will actually enrich your child’s life instead of worrying about “fixing” a person who is not broken.
- have realistic expectations for your child which are consistent with what we know about child development
- redefine what constitutes normal, success, and other arbitrary concepts which have nothing to do with happiness
- understand enforcing compliance is not compatible with presuming competence
- recognize that stimming is pretty awesome and "quiet hands" is bullshit
- discover communication comes in many forms, each as valid as the next
- become your child’s biggest ally
- save a ton of money by not being pressured to buy the NBAA™ book, or put your kid in 40 hours a week of paid therapy, or take an expensive NBAA™ training course

…and so much more!

Just listen to these parent testimonials:

“…have never used ABA on my daughter and I believe that's a large part of why we have such a deep connection. She knows she can trust me because I don't try to manipulate her or punish her. She has a lot of confidence because we have always embraced her for exactly who she is without trying to change her, and work with her to find supports that work for her as opposed to controlling behaviors. I also feel that keeping her out of ABA will help her to be safer because she knows that she is allowed to say no, even to adults and her autonomy is respected as much as possible.”


“The benefits that I have seen in my kids are that both of them have learned to self-direct and teach themselves things that interest them. And they enjoy learning. For example, I showed my son how to get to YouTube videos of fans (which he loves). I showed him several times. Then I let him figure it out. So he learned basics about how the computer worked and how to find something online. He learned how to keyboard and spell the things he liked. And I never had to break it down and teach him in tiny pieces and reward him with a potato chip or anything like that. I just did it with him and made it fun and respectful.”

“We tried seeing a therapist who wanted me to use ABA type strategies. It was pretty clear very quickly that they were outdated, ineffective and dehumanizing. Ditching all those ideas was the best move we made. I realized her anxiety was real and needed treatment with medication (with her permission and full choice) and wasn't just a manipulation (as was suggested to me đŸ˜¡). We also chose a school that was not authoritarian and allows her to grow at her own pace. She is thriving with zero pressure to be anything other than herself. I've also found that a lot of "behaviors" these therapists are so worried about are natural stages for neurodiverse kids. For example I had a therapist tell me I needed to force hairwashing more or she would never have good hygiene. With time and patience and frankly doing nothing but offer her the choices she prefers she happily takes a shower and washes her hair every two weeks which is perfectly fine. It sounds cheesy but there is no better therapy than just knowing your child and helping to accommodate their needs. Seems pretty simple!”
- Jocelyn

“Trust. Camille's only done trapeze and art classes as therapy. We choose her teachers carefully making sure they will respect her neurology. The trust really came out when Camille
started trapeze, and saw me not only advocating her but supporting her own advocating. We tried ABA like stuff when she was young and destroyed our relationship so seeing her once again trusting me was amazing. Now she's an incredible confident, strong, kid who has zero issues with her neurology. She has made all the big choices in her life with incredible maturity and insight.”
- Ginger

“I have never noticed a time when my daughter has not been 100% comfortable in her own skin, so to speak. She bounces or steps from side to side when she is happy or excited, and moves/flaps her hands when talking. If someone asks her why she does it, she simply says that she wants to. End of story. She has never been shy about asking me a difficult question or talking to me about unpleasant experiences, which tells me that she trusts me and knows I will listen and help her. I believe she knows that she is loved unconditionally and free to be herself. She is confident and proud of who she is, at just 7 years old - which is pretty great to watch.”
- Amy

“ I have not used any therapy. I just trust my gut in parenting my son. He is 17. We are close. He does, chores, errands, virtually everything with my husband and I. We role model. I would describe our relationship as honest.”
- Joan

“My son was never in ABA--the closest he came to compliance training was in pre-k with a short lived stint with a 'feeding therapy' type deal and in K with a ridiculous behavior mod program that lasted about 2 months. Both were mild compared to formal ABA...but both sucked the life out of him and caused long-term damage.
So--I write that part because it took time to rebuild trust. Changing schools, changing my mindset and going with my gut and simply trusting that I didn't need to push him or let people tell me I needed to make him do things he wasn't ready or able to do.
Benefits: he has learned to trust that I won't try to force him into something and that he is always allowed to say no. I've seen him grow to be confident and self aware while also seeking help and comfort easily when he needs that. He knows that I won't minimize his anxiety or his troubles even if I don't readily understand the "why" behind them. He knows how to self soothe and he knows that whatever he needs to do is ok.
He has learned countless things on his own time and of his own accord because he is given the freedom to do so.
I think that he truly knows that I will always have his back and that I am a safe place for him--and that I would never allow him to be treated with anything less than respect.
He knows he is in charge of his body and his mind. We are connected in a way that absolutely would not be possible had I put him in ABA and used any compliance training with him.”

“I'm going to be really, really honest... when we received Curlytop's dx, our psychologist told us we needed ABA, and I was destroyed when I learned it wasn't available in our area for kids over 5 years old.
So, I started a wild search for a provider, and in doing so, learned more about ABA and realized it was NOT what we wanted for our daughter.
I was "young," as far as being the parent of an autistic child. That is, I was a newb. I thought if the professionals were recommending it, it must be the right thing, but when I actually learned what it was, it didn't mesh with my parental ideals, or the goals I envisioned for my daughter.
So, we sought out speech and occupational therapies with providers that were willing to work with our standards. And the result was that my daughter has grown on HER OWN TERMS, and is more comfortable with who she is, because we've allowed her to have input into her therapies.
When ABA-esque goals come up in IEP proposals, we soundly reject them, and we say why. "No, she doesn't need to learn extended eye contact. It's painful for her. No, she doesn't need to learn to control her squawking. It releases stress for her."
The result? She's been allowed to decide what level of eye contact is safe and comfortable for her, and she uses it more with people she trusts -- even though it was not a "goal." Her vocal stimming is reserved for times of high anxiety, and not an everyday occurrence -- even though it was never a "goal" on paper to reduce it.
She feels safer, and more comfortable, because there is no pressure to conform to a model that is not meant for her.”
- Christina

“ *We are SO happy. My child is sooooo stress free and relaxed most of the time. Sure, he has support needs.... But we do what we do and life is really super joyful for us. My child trusts us, which is something I do not think we would have if we did ABA. I think that trust is huge. It's the basis for everything. (I never had that, so yeahhhh.) The only time he struggles is when we have fallen short on support (we don't always get it right) or when when life stuff is beyond our control and creates stress. And we are all learning to work through that stuff together. We are doing pretty damned ok most of the time.”
- Michelle

But what is NBAA™? NBAA™ stands for “Not Being an Ableist Asshole” to your kid. It might sound complicated, but it’s actually pretty simple. Not Being an Ableist Asshole will cost you nothing, but the rewards you and your child will receive are priceless.

How can you practice NBAA™? The secret is recognizing your child is a human being with thoughts, feelings, and a will of their own. You must learn to accept and love them for who they are, not for how they compare to the child you expected to have. (This actually also applies whether your child is autistic, otherwise disabled, gay, trans, or any other marginalized identity which is 100% valid and valuable, even if you do not understand it.)

When we refocus our energies, from trying to change children or make them indistinguishable, to helping them learn to love themselves for exactly who they are, teaching self advocacy skills, and helping them find the right supports and accommodations, the results will speak for themselves. At the end of the day, you will not have a non-autistic child, but you will have a child who knows they are loved and valued. You will have a relationship with your child that is based on unconditional love and acceptance. Change your thinking, change your world, but don’t change your child.

* I did not actually invent Not Being an Ableist Asshole™
** A sampling of places and parenting blogs for parents who would like to try NBAA™ which are 100% free and 100% respectful to your child’s beautiful brain:

Parenting Autistic Children With Love & Acceptance

Respectfully Connected

We Are Like Your Child

30 Days of Autism: Leah Kelley

Love Explosions

Autism HWY

Suburban Autistics

Michelle Sutton Writes

Erin Human


Diary of a Mom

Down Syndrome Uprising

Mama Be Good

image: multicolored stars and text with a blue/green megaphone. Text reads: Wow! Amazing! Revolutionary! Incredible! New Autism Treatment Guaranteed Results!

Wednesday, March 22, 2017

What It's REALLY Like When Your Kid Gets An Autism Diagnosis

Another day, another disgusting article from a non-autistic parent of an autistic child telling the world “what it’s really like” when your child receives an autism diagnosis.  I feel like I see these types of articles so often, yet each one is framed as if it were the first time a parent was ever given a platform to complain about autism  in the history of ignoring and speaking over autistic voices ever.  

Well, I’m a parent too and these types of articles that talk about “grief” and “devastation” and usually refer to non-autistic people as “experts” are not only ableist and offensive, they are abusive.  It is abusive to talk about your child to the entire world as if they are a problem to be solved.  It is a betrayal to your child.  It is a betrayal to the promise we make as parents to protect and unconditionally love our children.  

It’s also a lie.  And parents need to stop telling it to themselves, the world and most importantly, their own children.   How you talk about autism is how you are telling the world to treat your autistic kid.  Don’t ever forget that.

Do you want to know what it’s REALLY like to get an autism diagnosis for your child?  I can tell you what it was like for me as a parent to an autistic child since apparently my kid’s diagnosis is all about me.  Because the entire process is horrifying and scary, but not for the reasons you think it is.  

It was an answer to a question I already knew the answer to.  

It was watching him have to go through rounds of dehumanizing and invasive questions being asked about him right in front of him like he wasn’t even there and wondering why the hell they kept offering ME tissues and telling ME it was okay to cry.

It was doctors and therapists trying to convince me that ABA 20 plus hours a week was the only hope for my child to have a “normal” life.  Even when I knew in my heart that was wrong, they tried to convince me repeatedly that I needed to start working day and night to fix this beautiful, not-even-broken child that I am so incredibly lucky to call my kid.  It was being told that I was failing him as a parent because I cared more about his self esteem and happiness than trying to mold him into something he was never meant to be.  

It was navigating confusing and inaccessible services that I was told were necessary because of some bullshit “developmental window”.  It was being told that I was to ignore my non speaking child when he didn’t “use his words”, no matter how distressed he became.  A loving connection with my child was seen as a failure on my part.  I was “too easy” on him.  I made him “spoiled” and allowed him to “manipulate” me.  Even though I knew that when the world was too much, I needed to be his soft place to land.  We are told that when our children are autistic, we must be “tough” and to ignore their needs.  That is something I could never, would never do.

It was being pressured to make every moment “a teachable moment” instead of allowing him to enjoy his childhood or ever have a second of down time.  

It was being bombarded with inaccurate information from hate groups like Autism Speaks instead of being directed to learn about autism from actually autistic people.  It was being taught that autism was the enemy and that I had to be a “warrior”.   It was being told that I needed to fight autism because somewhere, there was another kid inside mine, a version of himself that was not even him and I was supposed to want that instead of the perfect kid right in front of me.

It was people giving me the sad face like my child’s neurology was something to be mourned.  It was seeing how pervasive and ugly ableism is in a completely new way.  It was the whole world telling me that I was a victim of my child’s disability….but refusing to see how their ideas and attitudes victimize disabled people every day.  

All of these things were not caused by autism.  They were not caused by my child being who he is.  They were caused by a world that is fearful and hateful toward disabled lives and would rather fuck up the relationship between a parent and child than admit it’s okay to be autistic.  It’s okay to be disabled.  Being who you are is not a failure.  Loving your child is not a failure.  

Getting an autism diagnosis for your child is not the end of the world, it’s just official confirmation in writing of something you already knew.  It changes nothing about who your child is and how they deserve to be loved.  Don’t ever let anyone make you think that it should.  

image: blue/white starburst background with white text that reads: "How you talk about autism is how you are telling the world to treat your autistic kid."