Meet The Autism Parents

Meet The Autism Parents8 min read

Making friends whilst hunting monsters

By Quinn Dexter (Autistamatic)

When someone in the autistic com­mu­nity meets a parent whose child has just received their autism diag­nosis, it’s a crit­ical point. You don’t have to be autistic to have the best inter­ests of autists at heart. Being autistic doesn’t guar­antee it either.


There are scary people are out there who send chills down the spines of all who strive for autistic equality. We need to know our poten­tial friends and allies from the mon­sters.

The mon­sters are all over the internet and the pro­lif­er­a­tion of ABA funding demon­strates that some have pow­erful roars influ­encing gov­ern­ment policy. Some nest at the heart of cer­tain autism char­i­ties and foun­da­tions, making the struggle for the fair treat­ment of autistic people ever more urgent.

The voices of thou­sands of advo­cates plus mil­lions of autistic people and our allies are united against these pur­veyors of false­hood, the snake-oil ped­dlers and the glory seekers. We rightly expose the mon­sters’ use of restric­tive diets and toxic chem­i­cals to sup­pos­edly cure their chil­dren of the incur­able.

Countless con­ver­sa­tions and media go into detail about the perils of ABA hoping to limit the damage caused and help par­ents find a better way to under­stand autism. We each spend hours every week, every day, trying to shut them down whilst putting out a pos­i­tive mes­sage that autism is nothing to be scared of.

Uphill

It’s a moun­tainous climb at times. It can feel like for every one we shut down, another two pop up. Some of us fall by the way­side – exhausted and emo­tion­ally drained by end­less onslaught, yet we almost always drag our­selves back into the fray to fight another day.

We have too much at stake to give up, whether it be our own lives, that of the people we care for, or from a pro­found sense of love and duty to all the autists of the world. Slowly, but surely, we make progress, but the end is far from in sight yet…

As Monster Hunters we seek out those who abuse their autistic chil­dren and those of adult autis­tics, too. Like modern day Van Helsings, we delve deep into the under­belly of the internet, rooting out vam­pires leeching off their chil­dren for noto­riety, for sym­pathy, or profit– yet think them­selves heroes.

Here’s Johnny…

Look at my Johnny, a super-high-functioning Asperger’s genius. He’s got a part-time job in a fish packing fac­tory and a girl told him he was sweet the other day. Maybe they’ll get mar­ried? What a great parent I am for making his life such a suc­cess. It’s been so hard to get him this far. I’m an autism war­rior!” they cry, whilst other mon­sters fawn over them in a mas­tur­ba­tory huddle of self con­grat­u­la­tion.

It’s absolutely right that we chal­lenge these people. Not only do they harm their autistic progeny, but they harm our entire com­mu­nity. Johnny might have missed out on the career his “genius” may have pre­dis­posed him to thanks to his parent’s med­dling.

Their con­tinued depic­tion of autism as nothing but parental tragedy and an adver­sary to be fought frus­trates every effort we autistic people and our friends under­take to bring about the accep­tance and equality so vital to our human dig­nity.

Autism Parents aren't all monsters
Autism par­ents can be mon­sters or our closest allies.

What creates an Autism Monster though?

Is it fear? Parents may be fearful that their child will be denied oppor­tu­ni­ties in life so they seek to remove the factor they see as pre­venting their progress – their autism. They want it cured or mit­i­gated. They seek the quick-fix, the long fix, the tem­po­rary or per­ma­nent fix – any­thing that will give their little Johnny a better chance at the life they want for him.

We make our­selves avail­able to them as autistic adults with the com­bined expe­ri­ence of our­selves and the many others who’ve learned from the mis­takes our own fam­i­lies have made. Trying to offer them a better way. We could steer them away from the false promises and the tragedy nar­ra­tive.

There is hope if they learn from what we know. If they col­lab­o­rate with us they may avoid hurting Johnny. Working with us to sup­port his needs instead of strug­gling to change him may allow him to grow up to live the life they want to give him. We offer to pass on what we have learned through trial and painful error, how to be hap­pier and make the best of our lives, often in spite of the “help” our own fam­i­lies, schools and doc­tors thought they were offering.

Why do some of them throw it back in our faces?

Why do they attack and under­mine us? What do they hope to achieve by ques­tioning our diag­noses, doxxing us, making false com­plaints about our web­sites or media and issuing aggres­sive yet bogus legal threats?

The monster’s fear comes from a darker place. Those who seek to under­mine the autistic advo­cates, activists and our allies are bigots, plain and simple. Their fear of the dif­ferent moti­vates them more than their hope for Johnny to have a better life.

They would rather he was a beer-guzzling, game-watching, part-time fish packer with super­fi­cial friends and an unhappy wife, than an aca­d­emic with maybe one or two friends and may take years to click with someone well enough to con­sider mar­riage. They want what they con­sider “normal,” and any devi­a­tion from the path they fol­lowed is to be resisted at all costs.

As bigots do, they build their lairs in cav­ernous echo cham­bers, sali­vating and chit­tering. Patting each other on the back for every inter­ven­tion that pre­vents Johnny from expressing his dif­fer­ences. It’s no coin­ci­dence that many of these par­ents can also be found expressing other intol­erant views: views about race, reli­gion, sex­u­ality, gender – in fact, any­thing that devi­ates from their narrow view of right and wrong, good or bad.

Alien

To them the phrase “suc­cessful autistic adult” is com­pletely alien, a con­tra­dic­tion, because to be autistic is itself a failure in their eyes. There is no chance of accepting they might be holding their “super-high-functioning genius” back. Even less that he could actu­ally just be an average kid with social and sen­sory dif­fi­cul­ties and the “high func­tioning” label they fix­ated upon doesn’t trans­late to “genius.”

They are only one kind of mon­ster though. We’ve not even yet men­tioned those who cater to the cat­a­strophe fetishists and the video voyeurs. Nor those who name and shame, the anti-vaxxers, the stool-excavators, and others.

We have no way of reaching the mon­sters. No clever words, no evi­dence, no sta­tis­tics or sci­en­tific papers can ever over­come their fun­da­mental revul­sion at our dif­fer­ences. They are a lost cause to us. We can only work to avoid adding to their num­bers.

In 1000 words I have described the people we are united in fighting and you may well ask why? Surely those of us who are immersed in the struggle for autistic equality and sup­port know exactly who our adver­saries are? We can spot them a mile off.

Or can we?

I’m not alone in meeting par­ents who were scared wit­less when their child was diag­nosed with autism. They knew nothing about autism before the diag­nosis, and every­thing they have been told has ter­ri­fied them. Free of pre­con­cep­tions but full of doubt, they know there’s no cure – but they want their Johnny to have the best oppor­tu­ni­ties in life.

When they come online to seek clarity, par­ents will speak the lan­guage of the doc­tors and the autism brochures they were given. They’ll say “Asperger’s Syndrome” but be shouted down by someone pointing out the changes to the DSM and Hans Asperger’s alleged unsavoury past.

Instead they try “Autistic Spectrum Disorder” and someone else angrily informs them it’s not a dis­order, it’s a con­di­tion. Maybe they tell them they shouldn’t call autism a dis­ability at all. Asking for advice about the ABA that the wel­come packet rec­om­mends is met with a wall of resis­tance– not only resis­tance to ABA itself, but to the charity they thought was helping them. 

They came online having been force-fed mis­in­for­ma­tion and unhelpful jargon. They had open minds, ready to learn from those of us who’ve been through it all. Their fin­gers were burned because they said the wrong things to the wrong people though.

If we meet them with crit­i­cism and deri­sion, is it any wonder that many par­ents have with­drawn from the online autistic com­mu­nity? Is it sur­prising they’ve retreated from engaging with autistic adults? Is it unex­pected that when they meet one of us who seems kind and tol­erant, they think we are an excep­tion to the rule?

Not every­thing that looks like a mon­ster, IS a mon­ster. We could do with reminding our­selves of that some­times.

The story continues…

The video below expands on this topic and looks at how we can improve first con­tact. There’s a look into why it’s under­stand­able for autistic people to some­times make mis­takes when we meet par­ents new to autism. More on the dif­fi­cul­ties par­ents have grasping the sub­ject of autism and meeting the expec­ta­tions of autistic cul­ture is also explored.

Please take the time to watch and share with your autistic friends and with par­ents new to autism. Perhaps those who are not mon­sters but are wary of autistic adults, too. Hopefully both sides can learn to under­stand each other a little better and get off to a more pro­duc­tive start…

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www.autistamatic.com

 

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7 Comments

  1. As much as I see the points being made, I find this a bit over the top, and I am an autistic advo­cate. The par­ents named are doing the best they can to cope with the sit­u­a­tion they are in. Their frames of ref­er­ence maybe as stated, but that can be as much due to igno­rance and, well, that’s the society they live in. That’s who and what they are.

    I think we should all be careful when being aggres­sive back. Granted many par­ents turn up online thinking they are in some sort of ‘fight’ with total strangers who are writing what we do, that they find opposing of their ideas and upset­ting. But no one is knocking on doors and raiding their homes. Parents are still living in free coun­tries where they can do what they want to their chil­dren.

    From this, I find a lot of online argu­ments silly. At the same time, everyone has futures to look for­ward to where out­comes may well be what people could never have pre­dicted. I think it’s a matter of decades, or the end of this cen­tury, before it all ‘evens out’. Because what is hap­pening here is unique in recorded human his­tory I think. These are the pio­neer days. We do not know what the future will bring.

    1. Author

      Have you watched the accom­pa­nying video yet Paul? This is a 2‑part essay — half in writing, the rest in the linked video. The video goes into much greater depth about the moti­va­tions and sen­si­tiv­i­ties of both autis­tics who bite back and of par­ents new to the world of autism. It very clearly advo­cates for under­standing & tol­er­ance on both sides and talks of the poten­tial con­se­quences of unnec­es­sary con­flict — pretty much every­thing you’ve high­lighted in your com­ment.

    2. “When they come online to seek clarity, par­ents will speak the lan­guage of the doc­tors and the autism brochures they were given. They’ll say ‘Asperger’s Syndrome’ but be shouted down by someone pointing out the changes to the DSM and Hans Asperger’s alleged unsavoury past.

      Instead they try ‘Autistic Spectrum Disorder’ and someone else angrily informs them it’s not a dis­order, it’s a con­di­tion. Maybe they tell them they shouldn’t call autism a dis­ability at all. Asking for advice about the ABA that the wel­come packet rec­om­mends is met with a wall of resis­tance– not only resis­tance to ABA itself, but to the charity they thought was helping them. 

      They came online having been force-fed mis­in­for­ma­tion and unhelpful jargon. They had open minds, ready to learn from those of us who’ve been through it all. Their fin­gers were burned because they said the wrong things to the wrong people though.”

      Awesome.


  2. “Cut one head off,two more shall take it’s place”
    Hydra

  3. To all readers, be sure to watch the accom­pa­nying video! It’s an objec­tive and under­standing approach to all sides with real ideas for improve­ments

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