Things I Type at Parents

Things I’ve typed at parents during the first half of today:

1. “Change society, not your child.”

2. “Your daughter is who she is partially because she is autistic. By saying ‘the person she is with autism, not just autistic’ you’re also saying ‘the person she is with femaleness, not just female’ and a litany of other things. Autism is the filter through which we experience our lives and affects every aspect of it, all day… every day. Not one thing we do, say, hear, see, smell, taste, or touch isn’t influenced by our being autistic.

Please don’t diminish the role being autistic plays in your daughter’s life. Nobody is _just_ autistic, just as nobody is just any one trait which makes them who they are. However, certain traits are pervasive in every aspect of our lives and being autistic is one of them. Love her & who she is… inclusive of being autistic, not despite it.”

3. “A label or diagnosis does not mean anything with regard to capability. Your son has his entire life ahead of him. He has unlimited potential to fulfill his dreams, just like every other child. Nobody can predict the future or someone’s ultimate outcome in life. Allow him to chart that course as needed, just be there to help navigate and advise. Your support is his biggest asset, aside from the belief he can do anything he puts his mind to.”

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Things I’ve typed at people this afternoon, in comments on an article regarding a boy who learned the heimlich maneuver from watching SpongeBob and saved one of his classmates by performing it… and the hero kid just happens to be autistic…

1. “Why does it matter that the kid is autistic? Can we focus on the fact the kid is a hero, NBC? We autistic people aren’t stupid or incompetent. Please stop making it seem like a huge deal that we can… *gasp* LEARN THINGS! 😮”

2. “We are not ‘suffering from autism’ – it’s not a disease, nor does it cause anyone to suffer. It is a legitimate neurological difference in how the brain processes sensory input/output. Do social constructs set up for neurotypical people cause us to suffer? Yes. Does this put us at a disadvantage? Yes. Do we have to work harder to adapt to society’s expectations? Yes.

Please don’t try to claim that everyone is on the spectrum, because that simply isn’t true. By doing so, you diminish the adaptations and hard work we, who truly ARE autistic, have to deal with every day in order to function and thrive in a world not necessarily set up for us to do so.

I am autistic just as I am female. I do not have femaleness. I cannot leave ‘my autism’ at home, nor will I never be not autistic. By saying I’m someone ‘with autism’ you infer that it is something which will be or can be changed. Nope. It is a filter through which I experience every aspect of life and affects every aspect of it, all day… every day. Not one thing I do, say, hear, see, smell, taste, or touch isn’t influenced by my being autistic.”

(The above quote was typed in response to someone who said: “I hate how people call people suffering from autism ‘autistic’ – why can’t they say ‘suffering from autism’ ? They don’t refer to people with other conditions like that- they always treat people who have autism like idiots-They don’t seem to realise we are all on the autism spectrum- it is part of the human condition” …and though I really hope that comment was satirical, I’m scared that it’s not.)

3. “Autistic people aren’t stupid. We are human. We have empathy. We can learn things and do heroic things. It doesn’t make us any more heroic than anyone else. He is a hero. His neurology has nothing to do with that. It’s like saying ‘Child with Hispanic heritage saves classmate by learning something from SpongeBob!’ or ‘Child with femaleness saves classmate by learning something from SpongeBob!’ …his being autistic has absolutely NO bearing on this situation. We’re humans. Stop acting shocked that we can perform tasks and learn things.”

4. And, of course, someone had to jump in with: “We see what you are saying, but there are some severely autistic people who are not in as good a shape as you. I would hold the ridicule until we see the hero.”

To which I wrote: ” What exactly do you know about my life or what ‘shape’ it is in? I’ll wait.

OHHHH… you assume that because I can type, as a means to communicate in my mid-thirties, I must be okay? Meanwhile, I live with my mom, can’t work a ‘real’ job (thanks to severe social aversion and anxiety issues due to years of bullying & abuse by peers and others as a child), am partially non-verbal, and have years of therapy under my belt… not to mention severely diminished executive function capacity. Care to continue making assumptions?”

…and it’s only 2:38PM.

OUTSIDE READING: 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm

THIS ARTICLE IS SO WONDERFULLY ACCURATE!!!

And in the comments on the Respectfully Connected FB post, Bri from RC elaborated on number 9:

“# 9 recommends critically thinking about whether we would ask a non-autistic child to engage in this therapy. If the answer is no, it is a good indicator that we should think carefully about its role, benefits and purpose for our child,

If the goals are to ‘regulate, communicate and think’ *like a neurotypical child* then the intervention is not in line with a neurodiversity paradigm.

We are not able to comment specifically about therapies, other than to say Respectfully Connected all reject normalising and/or compliance-based therapies.”

That deserves some serious applause.

Sometimes a Little Right Isn’t Enough

For everyone wanting to rave about how wonderful Sesame Street is for creating an autistic muppet… they haven’t. They created a cartoon character and a bunch of videos pushing a mostly negative agenda. Please read this write-up of the materials and why Sesame Street needs to start over with this initiative.

Sometime a little right isn’t enough, especially when overpowered by so much wrong.

An excerpt (one of many things wrong with the materials), which I feel is especially poignant:

“I’m going to say something I know is controversial, but parents’ complaints about how hard it is to raise an autistic child do NOT need to always be shown. They don’t need to be part of every conversation about being autistic. Parenting is hard sometimes, yes. But this narrative of suffering only strengthens the stigma that autistic people face in the world. It helps NO ONE. Not even the person complaining. And certainly not their child.

Can you imagine Sesame Street making videos of parents of typical children complaining about how difficult it is to raise their kids? Can you imagine Sesame Street doing this with parents of kids with other disabilities? Somehow it is unique to autism that the ‘parents’ lives are hard’ story must ALWAYS be included. It really does not have to be included. There is a time and place to talk about how hard parenting your autistic kids can be, and it’s the same place you talk about how hard parenting your typical kids can be, how hard your marriage can be, how hard your friendships can be – privately, with trusted friends and family.”

– Not in Love With Julia

It’s Okay to Say “No” to Hugs

saynotohugs

Please respect your child’s bodily autonomy and teach them how to make their own decisions when it comes to consenting to sharing physical affection with others.This is extremely important for children to learn, so they feel comfortable having control and being able to say, “No!” when they need to.

OUTSIDE READING: 10 Things Autistic Kids Pick Up Quicker When Not Bullied

“As an educator, I’d like to say this: Why in corn’s name are you waiting for a child to be abused by their peers in order to ‘promote social justice, tolerance, respect, and acceptance’? The time for that promotion is all the time, no matter who is or is not in your current classroom. If you wait until after your kids have already picked up on your lack of these basic expectations and started bullying one of their peers, your students will know that your new social justice initiative is so much horses–t.”

“What good is empathy and compassion if childhood trauma prevents you from using it? Besides, studies show that abused children are more likely to become abusers themselves. Why the hell are you taking that risk with your child? Being bullied is THE WORST way to have to learn compassion.”

– Ten Things Autistic Kids Pick Up Faster, Better, and With Less Trauma If They Aren’t Bullied Into Learning Them

OUTSIDE READING: 9 Autism Facts the Presidential Candidates (And You) Need to Know

Thanks to Mashable for publishing this very on-point and necessary breakdown of things the public should know. And kudos to Julia Bascom from The Autistic Self Advocacy Network for helping explain things the way they should be explained.

Please share this article to spread the word, lest more misinformation take hold in the minds of the general public.

How Not to Awareness

If you are a parent who is creating an “awareness” campaign and you decide you don’t want to involve autistic people… stop. Don’t do that thing you want to do. You don’t get to speak about us, without us.

And awareness… what a joke. Let’s not, shall we? Education is what you want to focus upon. Not some elusive Awareness Fairy so many people seem to think will magically educate people on all things autism if you can just manage to get enough people to post a gimmicky picture to social media using your hashtag. Not gonna happen.

No amount of silent selfies, red licorice challenges, blue-filtered userpics, or puzzle piece anything is going to teach people about what autism really is, how it affects me & my peers, the accommodations we may need, and how the general public can help push for supports & services needed by those of us who are autistic. Your gimmicks aren’t our solution. They don’t make you an ally and they don’t make you an advocate… they make you someone who is actively NOT listening to us about our needs.

And when we speak up to call you on your inactivism, then you decide to tell us to be quiet, delete our comments, or even BAN us from your community? You become the problem we are fighting against, rather than being able to use our energy and resources to be heard, we have to use them to talk OVER you… ABOUT US! About ourselves! There is something seriously wrong with this picture.

Over the last few days, a page which rhymes with “A Dear in the Strife of Pawtism” (I refuse to give them any traffic unless people want to get clever) decided to do all of that and more.

After taking literally hours out of my day today, to diplomatically (though firmly at times, when needed) explain to non-autistic people about why so many upset autistic people and their allies were crying out against the actions of said page… the page decided to ban me. And every other autistic advocate and ally.

This is after they deleted several posts of non-apologies and ablesplaining why their “campaign” wasn’t meant to be offensive and can’t we all just get along… effectively erasing the voices and dismissing the advocacy efforts of the very people they purport to be trying to help. So I call shenanigans on that entire page (which, by the way, is an exploitive use of their child’s life as a means to get attention for the parents by using the disgusting ploy of OMG LOOK HOW HARD IT IS TO PARENT AN AUTISTIC KID PITY US PLEASE).

As my friend Angelica summarizes perfectly: “Their whole ‘we didn’t ban people to silence them, just meant to diffuse the situation…’ response was total BS. Like seriously? Start a ‘silentselfie’ campaign and then silence the very people you’re pretending to support because they’re calling you out on a bogus campaign?

The whole comment thread was a vomit bucket of able-privileged parents refusing to listen to an entire community because they feel more comfortable living in their willful ignorance than actually owning up to their mistakes and taking the responsibility to make positive changes.”

And I call shenanigans on anyone else trying to raise/spread “awareness”. Let the Awareness Fairy disappear to the Land of Make Believe and start focusing on reality with the rest of us. Autistic people exist and we need real support and real services. So maybe you all can make a REAL effort to help us secure those, in order to adapt and thrive? Thanks.

Consent is Crucial

Consent is so enormously important. I have such little control over most things in my life that I relish every little bit over which I do have control. When someone removes my ability to make decisions for myself, it feels like a major violation of my very existence… deeper than many people likely feel in those situations, due to autonomy being something so precious to me and something many take for granted.

“With her head inside one of the tubes and only her feet visible beneath the structure, it would have made for an awesome picture. So I asked, as I always do, if it would be okay for me to take a photo. She said no so I set my phone down. The young woman helping us said, ‘That’s why you don’t ask, Mom. You gotta just sneak it!’

‘My daughter is autistic,’ I said, trying to sound lighter than I felt. ‘I don’t ever sneak anything with her. It’s so important that she know she can trust me.'”

Diary of a Mom

John Waters Commencement Speech


There’s a lot I could quote from this video, but it’s ALL worth watching/reading (and being John Waters, you bet your ass it’s delightfully NSFW). This is the most relevant – I feel – to what I partially hope to accomplish with Giraffe Party…

“And, parents, vice-versa: You don’t get to order up your kids, either. Maybe your daughter did tattoo her entire face. Well, work with that you got! Think positively: Maybe she’ll open a fancy tattoo parlour in Paris.

I’m touched to sometimes see distraught parents bringing their angry and defiant teenage children with them to see my spoken-word show in a last-ditch effort to bond. At least both sides are trying. The truce of maturity will come to families if every member is patient. I often look back in wonder at how understanding my parents were. Dr. Spock didn’t have a chapter in his child-rearing book on how to handle you son if all he wanted to do as a child was play Car Accident. Yet my mom took me to junkyards as a toddler and let me wander around fantasizing ghoulishly.

My dad even lent me the money to make Pink Flamingos, and I paid him back in full – with interest. But, looking back, did I really expect him to be thrilled that I had made one of the ‘most stupid, vile, repulsive films ever made,’ as Variety called it?

My parents made me feel safe, and that’s why I’m up here today. That’s what you should try to do to your children too – no matter where you get your children these days.”

You can read the full transcript here.

Aggressive Kid Flowchart

aggressive_kid_flowchartBehavior is communication. ABA isn’t necessary, because it is compliance based. You should not be working to alter who your child is, but helping them to adapt while giving them the support & accommodations they need. There’s a delicate balance, but with assistance, you CAN find that balance. This flowchart is a good way to find solutions to aggression, overstimulation, and/or meltdowns.

The full/larger version can be found here.

Note: If you end up at the option to “record” the behavior… DO NOT VIDEO IT. Write it down. This is essential for the privacy and respect of your child. Do. Not. Video. Your. Child. Having. A. Meltdown. EVER. There’s no reason for it. NONE.