Doing “nothing”

I wrote something on my personal Facebook page the other day about how sometimes, the best thing to do is nothing, that sometimes things have ways of working themselves out. Too many times, parents are urged to do something about their child being autistic. Your kid stims, so you employ an ABA therapist to stop it. Your kid holds their pencil the wrong way, they’re too sensitive to certain fabrics and textures, and you put them through occupational therapy. They can’t speak at age 2, so you put them through speech therapy. I am not saying all of these are bad. I’m not. It just seems to me like people tend to go overboard. What four year old actually needs 40 hours of ABA coupled with both OT and speech with perhaps a dash of physical therapy added in as necessary? What are we trying to accomplish here? Are we aiming to help our kids navigate the world the best way they can or are we pushing them to be less autistic?

So many times, I see this therapy or that get the credit for a delayed developmental milestone. My daughter’s language improved and my parents want to credit the ABA, while I want to say, well, perhaps, but maybe it was our instinct to label everything in the house and treat her like a person who understands what we’re saying – in other words, presuming competence. I’ve heard other people talk about their success with gfcf diets and how that caused their child to start talking. I am not saying that it has no impact, because it might. But when are we going to get it into our heads that autism is a developmental disability and as such, our growth and development is delayed but not stagnant, and sometimes, it just happens naturally?

My son had the same level of speech issues as my daughter, but we didn’t put him through tons of speech therapy like we did with her. He managed to begin speaking on his own and while he has a few issues with language, he can speak well, express his thoughts and be understood by most. My kids are different and I’m not saying that I think that the same thing would have definitely happened with my daughter. What I am saying is that maybe we need to chill out just a bit, let them be kids, and don’t worry so much about doing every therapy there is.

Our goal should always be to do what is best to help our child succeed. That doesn’t need to be some extreme 45 hours a week therapy or intensive program. Sometimes, it’s just meeting them where they are, understanding what exactly they need to handle the world, and pushing for them to have the accommodations they need.

Most of all, if you can, ask them! My son will tell you that he can think better when he’s on medication and he’s less frustrated. My daughter is not very verbal but can absolutely let you know when something is bad. She used to have OT, but doesn’t anymore because it was too much. And that’s fine. The one thing that would have prevented the harmful, curable style “reprogramming your brain” therapy that I went through in childhood/my early teen years was if someone had said, “how do you feel about this?”

Think about your intentions.

Ask the autistic person in your life how it makes them feel.

It matters.

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To the parents of newly diagnosed autistics

I’ve wanted to write something, anything, to the parents of those newly diagnosed for quite awhile. I feel like there are many well-intentioned parents who want to do what’s right for their kids and above all, want to see them succeed, but just don’t have the right information or tools in order to do this. This isn’t the parents’ fault. This is the fault of “professionals” and the media and how we talk about autism.

Let me explain. It has now been about four years since my daughter was diagnosed with autism, and a good 5 1/2 years since we first knew she was autistic (ahem, not that something was “wrong”, but that she had developmental differences that made us investigate further). At the time, autism was an unknown to us. Sure, I’d heard the word spoken as a teenager and young adult, but I had no clue what it meant. Even as I began to google information about the disorder, I still lacked information. There were statistics (then 1 in 150) and signs and symptoms, but no information on prognosis or what happened as autistic people grew. There were horror stories and even now, the first few searches for the word “autism” lead to Autism Speaks’ website. Autism Speaks as an organization was new, though the ideas were not. The information was grim and bleak, and let me tell you, I was afraid. What would my daughter’s future look like? Would she have a future? The first two books I read about autism were by JennyMcCarthy and Kim Stagliano, and boy, was that a mistake. I knew that what they were telling me was wrong, as a college educated person who once considered a biology major.

But then, in the midst of all this awful rhetoric about how tragic my daughter’s life would be, I realized something. I realized that she and I were not so different. Oh, sure, her ability to communicate verbally was not anywhere near mine. But somehow, I managed to figure out what she wanted. I realized that though I myself had been given various diagnoses in my life (learning disabilities, ADHD, dyslexia, etc), none had truly fit before. I did a bit more investigation, and realized that if my self evaluation was correct, I was autistic. And if I was, well, my hope for my child wasn’t completely lost, because despite having these challenges, I had managed to do quite a bit in my life, and who was I, who was anyone to say “she’ll never speak, she’ll never live on her own” etc at three years old? We certainly don’t make such grand statements to parents of neurotypical children, do we?

It was around this time that the Temple Grandin movie aired, and I watched with rapt attention someone like me grace the screen. Oh, no, I’m certainly no scientist, but I could relate to the struggles of going off to college and being different, and being unable to handle certain things deemed simple by neurotypical society, but which were devastatingly difficult for me. The movie ended and I googled her, never having heard anything about her, and the more I watched her videos on YouTube, the more I saw myself, my own movements and mannerisms and I clung to that feeling of someone like me. I began googling more about autistic adults, and while there wasn’t much, I was certainly finding at least a few pieces that struck a chord with me. I read Jim Sinclair’s “Don’t Mourn for Us”, and a few other pieces by autistic adults. I discovered for the first time why Autism Speaks was not helping autistic people, and why “lighting it up blue” is a pile of crap. I became uncomfortable with the idea of “awareness” and I hoped for acceptance, understanding and inclusion.

So what would I say to parents of the newly diagnosed? This is what I would say.

It is not hopeless.An autism diagnosis is not a death sentence. Autism did not take your child away like a thief in the night. Your child, the one you brought with you into that important appointment, perhaps one you’ve waited a year or more to complete, is the same child you are leaving with. And you know what? They haven’t changed. You simply possess more information that you did not have before.

Doctors are not always right.This doesn’t mean that the diagnosis itself is wrong (though it could be; I personally was diagnosed with several disorders before doctors realized that autism fit better than any of those). What this means is that believe it or not, doctors do not always know what autism is like, what is helpful and what is not when it comes to autism. There’s been a push to promote ABA therapy. Let me tell you this: while ABA can be used as a tool to help your child acquire new skills, it can also be quite dangerous if done using the Lovaas protocol. An important read regarding this can be found here, “The Cost of Compliance is Unreasonable”. It is not essential that you follow recommendations for every therapy. Too often, parents wonder why their kids are cranky or are exhibiting new (and to them, “bad”) behavior. Logically, they think they’re doing the right thing, but 40 hours of intensive therapy, plus any speech, OT, or PT (which could add another 3-6 hours a week) is an enormous amount of time for any kid, especially a four year old.

Autistic people know more about autism than many “professionals”. There are many ways of finding autistic adults, some of whom will gladly help and/or answer questions, if done so respectfully. However, none of us really want to become a self narrating zoo exhibit (Thank you, Jim Sinclair for that quote). Google what you can, evaluate whether it’s applicable and whether its aim is to benefit you or whether it’s to benefit your child.

Dispense with the idea of functioning labels. We all have bad days. We don’t need our success and abilities judged by whether we can drive a car or not (some NT people can’t, either) or whether we can speak or not. Declaring that you don’t need your child to have a cure because they’re “high functioning” alienates those among us who are not HF by NT standards. Being able to speak, drive, live on our own, etc. is not the end all of success.

Love your child.This seems like it doesn’t even belong here, doesn’t it? Of course I love my child! This is what you’re provably thinking, right? But is it true? I know, I know, it’s a hard question to ask. If all of the things you do to help your child made them no different than they are today, would you still love them unconditionally, accepting them just as they are? Love your child. Appreciate them for who they are. Don’t let your aim be that your child no longer appears autistic, because that is draining. Appreciate every second, and realize that in the end, you may never hear the words “I love you,” but that doesn’t make it any less true.

You’re not really an ally

Trigger Warning for pro-Autism Speaks arguments, silencing of autistic people, and curebie rhetoric

You’re not really an ally if you ignore and silence Autistic people.  If, when you ask for followers to tell you the pros and the cons of Autism Speaks, you say that the Autistic people didn’t give you “rational” arguments, ignoring the fact that some of your followers triggered me into a near non-communicative state, well, you’re not an ally.  If you threaten to shut down the conversation if things get “out of hand”, but don’t shut it down for oppressive, bullying comments by the parents and only shut it down when a number of Autistics begin to argue against those points, you are not an ally.

Earlier this week on the Ink4Autism page, several Autistic adults posted a link to my “Why I am Against Autism Speaks” article that I posted on Tumblr just about a year ago.  Because of this, the page opened up discussion as to why Autism Speaks isn’t the best organization for supporting actual Autistic people. (Just a bit of background: Ink4Autism is a group of tattoo artists who are sending the proceeds of their inking to Autism Speaks for the month of April).  After about 12-14 hours of discussion, the discussion was closed.  You can read the entirety of the discussion at the link above, but I’m going to quote a few gems (leaving out the names, but the discussion is on a public page, so you can go to the above link for more).  

Could be internet trolls just trying to get our panties in a bunch….relentless little f’s

 

This was in response to why people sent information against Autism Speaks.  Because instead of listening to Autistic adults, we’re just “internet trolls”.

 people may not like the word “cure” but I am sorry. I want my son to speak, i want my son to not be looked at differently, I want my son to be able to tolerate noises, I want my son to be able to do alot of htings he cant do because of the autism in him. I love him with all my heart — we all love kids to death but if they can find a pill for people with depression, dementia, personality disorders, and so many other things to aleviate symptoms…maybe not “cure” it. Why not hope for one where a child can suddnely speak, a child can look you in the eyes and say I love you. May not want to say “cure” but……

 

Because accepting the child you have and helping to expand their abilities through support rather than trying to therapy them into looking like they’re neurotypical is just too much to ask? Because eye contact and verbal communication are the end all? 

 I think any organization that brings awareness about Autism is awesome. I do not want a cure for my son, but I sure would like to know what causes Autism and I would LOVE to spread awareness to others. Autism Speaks does that. My son is high functioning, but it is HARD, and I love that there is multiple resources available to me.

 

I find it interesting when parents bringing up the “cause” argument. Autism is not a disease.  It doesn’t need to be “treated” (except with respect, support and understanding).  So why do we need to know why it exists? I am certainly not anti-science. I just don’t see what good spending all this research money on a cause (and thereby developing a prenatal test to screen for autism) when there are plenty of autistic people here right now who could tell you what the issues we face are, and how to mitigate those.  I have a few ideas.  Ask me.

 One of the greatest achievements of Autism Speaks, which I haven’t seen mentioned yet, is their efforts to get proper insurance coverage in every state for autism therapies. They were essential in the fight for military families, who fall under federal law, to gain autism coverage as well. Without their lobbying and organization, none of this would have been possible.

 

This was a “pro”.  This was something they see as good.  This is something that they see as helping autistic children and their families.  Please read The Cost of Compliance is Unreasonable. I am not in favor of ABA, though I have utilized ABA therapists for educational purposes when our school district failed us.  I have been very careful about who I allow to interact with my child and how they do so.  Here are a few articles on why ABA isn’t a good thing (besides the one above, which if you haven’t read, you need to).

The Truth about ABA (references abuse and aversives). 

An Open Letter to Families (very explicit references to abuse)

What They Should be Talking About 

are you saying a parent can’t decide for a child and that we need to wait for a child to become an adult before a decision/contribution can be made? What about the non-verbal? Should they have an advocate speak on their behalf?

 

Oh Lordy.  This one got me.  No, a nonspeaking person does not necessarily need an advocate.  They may need assistive technology and support, but they don’t need someone to speak over them.

Listen, I’m all for folks expressing their opinions.  I promise.  I’d rather know what you really think, what you really believe than have you lie to me.  I want to hear different viewpoints, and trust me, my own have changed over the years.  The thing is, non-autistic parents of autistic children have their voices listened to almost constantly.  Autistic people have to fight every single day to get someone, anyone to listen to us.  Let me give you a sampling of some of the thoughts voiced after the discussion on the Ink4Autism page.  

 Pick the organization that fits you the best. Nothing is stopping the complainers from doing something to raise money for their org of choice. But I guess it’s easier to criticize the person trying to make a difference than it is to actually DO something. Keep up the good work and thank you raising awareness. After seeing your page, I got an autism tattoo last April. That tat has sparked many conversations that have made my Aspie’s life a little easier.

 

 

To the people who aren’t happy with that choice… Go and start your own page supporting the people you want to. If you’re giving money to a registered charity on the street you don’t tell the person holding the bucket ‘I’ll only support you if you change charity’. You either support them or you don’t, the choice is yours.

Back to Ink4Autism, you can’t please 100% of the people 100% of the time. What you can do is believe you are doing a great thing. Any work done towards raising awareness is amazing and helps our community. You are doing something for nothing and you’re doing it with grace and style. There aren’t many who are brave enough or driven enough to do what you do. Don’t let this bump in the road bring you down, it’ll pass, people will move on and you’ll still have something great in your life story.

 

 Don’t let these people get you down. You’re doing a great thing. And I’m very proud to be one of the artists doing work to help the cause. Keep up the good work.

 

And there we have the othering.  “These people.”  Instead of talking about us like we matter, we’re just “the other” who are asking for far too much or just stirring up trouble, rather than raising legitimate concerns about an organization that really does actually hurt us.  

 what really matters is that we are all at peace with our choices and decisions regarding our children and our support. Each and everyday I know I am doing exactly what I am suppose to be doing for my child and my community, thats a wonderful feeling.

 

Actually, it does matter.  It DOES matter which organization you choose.  Would you rather donate to an organization run by people who actually are Autistic, or an organization that seeks to eliminate people who are? The answer seems kind of simple to me, depending on what your aim is.  If your aim is to never again have another person like me born,who tells you that autism is a tragedy that should be prevented and that we need to “fix” autism (i.e., make them “look neurotypical”), well, I suppose then Autism Speaks is your best choice  If your aim is to support Autistic people who exist and live in your communities, I definitely think The Autistic Self Advocacy Network is your best bet.  

I wrote the following post on the Ink4Autism page the other night, and I continue to stand by it (please forgive grammar errors; I had been rendered nonverbal and was very close to complete meltdown mode).

Dear Ink4Autism, I want to tell you that I’m grateful that you’ve opened up the conversation about Autism Speaks. I am the author of the attached piece, which I see has been widely shared here. http://goldenheartedrose.tumblr.com/post/17644810872/why-i-am-against-autism-speaks-made-rebloggable-by

I want to say one thing, and that’s your words are one thing. Saying that you’re listening to autistic adults like myself is one thing. Your actions are another. I am certain that there are a good number of us who will see what comes of this discussion. It is one thing to allow autistic people to have a voice in the discussion (and really, it isn’t something that should be rare…mostly, we should lead the discussion).

If you or any of your followers think that we are self centered, trolls, or care only about ourselves, you’re dead wrong. We want to pave the way for a better future. For us, for our kids (I have two on the spectrum besides being autistic myself), for other autistic and otherwise disabled people. Are you aware that the rate of abuse of disabled people is 70%? And that autistic adults face an 85% unemployment/underemployment rate? This is now. This is what we face right now. Please consider that and I hope you drop your support for Autism Speaks.

 

What you do to actually help and support Autistic people who you are claiming to help and not simply their families to “deal with their burden” of having to deal with an autistic child is what speaks loudest to me as an Autistic person.  Not what you say you will do.  Not what your intent is.  What you are actually doing is what is important.  Think about that.  

 

On Stimming and why “quiet hands”ing an Autistic person is wrong

Trigger warnings for ableism, abusive therapy, prevention of communication, and self injurious behavior (at the very end)

I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.

When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.

I could potentially go on and on about how my hands help me connect to a world that is often baffling to me, but I prefer to keep this explanation short and simple. Stimming is communication. Did you get that? Let me say it again, until it sinks in. Stimming is communication.

I recall reading, around the time I began to learn ASL, about D/deaf individuals who were forced into becoming oral, who weren’t allowed to use sign language. I would say ASL rather than sign language, but I’m not all that certain that the practice was US-centric. I recall being horrified, but not being surprised, because boy, did that sound familiar.

I was lucky (?) enough to have not received my autism diagnosis in childhood. I was 30 when the diagnosis was confirmed (though a professional suggested it at age 28). This meant that like many of my peers, I was treated as though any issue I had, any difficulties were a result of laziness or stubborness, not because the world was difficult to live in. I was lucky to avoid ABA and most other therapy, but that didn’t save me from well-meaning teachers and relatives who stilled my fingers, my legs, my body, sometimes even physically restraining me during a meltdown (though they thought of them as “tantrums”). These weren’t bad people. I won’t excuse their behavior, but there was far less known about autism at the time, and I doubt the treatment I received would have changed if I had been diagnosed at age 4, 9, 16, whatever. It probably would have been worse. They focused more on me when they felt I was drawing too much attention – to them, to myself.

I don’t recall being publicly shamed for stimming until I was a teenager. It was on a road trip with my high school choral group, and we had just performed for a church service (did I mention we were a private Christian school?). Afterward, we were seated onstage. I couldn’t look at the minister because of the overhead lights, so I focused on my fingers. I rocked and flapped a bit. I didn’t even notice I was doing it until afterward, when my choral director pulled me aside and scolded me, telling me I was “disrespectful” and “an embarrassment” to my school. I prayed that the ground would swallow me up, and I spent the night in my hotel room crying and feeling ashamed. And for what? For finding a way to deal with my overstimulation? For failing to live up to NT standards?

So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.

Sincere thank you to Brenda Rothman @ Mama Be Good for the inspiration to write this.

Final note: Please understand that this is not talking about self injurious behavior and redirecting that. I used to repeatedly bang my head against the wall until I discovered shaking it rapidly side to side worked just as well, providing the same effect. Investigate the cause of SIB and work to redirect to keep your kids safe. But don’t hold them down.

What they didn’t tell me

TW: mentions of abuse, therapy, etc.

When you are a child, they teach you to comply. Deviate from that and you will be punished, sometimes abusively so. This goes for most children, but specifically is relevant to Autistic children.

I was not diagnosed as a child, but I did know I was very different from my so-called “peers”. I had no desire to communicate with people who called me names, who hurled ableist slurs my way. It was very clear very early that I was not a neurotypical child, and it was a good eight years of testing before anyone placed a label on me, and even then it was wrong (kind of…I still have ADHD symptoms, so I cannot say that diagnosis was wholly inaccurate, but it wasn’t the only neurodivergence I had). Despite not having a label, I was told how to behave. I was told that adults were to be obeyed, not questioned. I know this is true for most children, but it was most certainly true for me, possibly more than my NT peers.

Because my NT peers figured out what they never told me. They never told me I was allowed to say no. They never told me that I maintained autonomy over myself and that I could decide things for myself. They never expected me to amount to much, so why would they tell me this? Why would they tell me that I could stand up to bullies? That I could stand up to adults, even my own parents, if they hurt me?

I was taught to be nice. To be compliant.

I still have trouble saying no.

Today, I am nearly 32 years old. A relative of one of my son’s classmates stopped me today for a ride to the school, where I was not going. I nearly missed meeting the bus, and all because I couldn’t say no. I made a few other social faux pas during that 25 minute car ride. But I’m still struck by the fact that no matter how much I yell “don’t treat Autistic adults like children”, I still see myself in a way that isn’t quite as “grown up” as my peers. This woman was likely a good 5 years younger than me, but I still saw her as an “elder”, not a “peer”. Is that internalized ableism? I don’t know. What I do know is it sucks.