Dear Adult Autistics

This is something I’ve been struggling with for a long time now. Doesn’t help seeing comments written by you saying, “I hate autism moms” under a post by an adult sharing THEIR lived experience and aiming to speak for ALL of you.

You say only YOU have the write to speak about, or speak on, autism.

And I write this to the angry ones who “hate autism moms.” The ones who say that by sharing the hard times, autism moms make it seem like autism is a burden. That it’s not so… That’s like me telling this British woman (I think her name is Kate Garraway) who keeps sharing about her husband’s terrible struggle with Covid that she shouldn’t tell us he can’t walk, and talk well, because others who had covid, can… And that she’s making Covid look like a burden because of her honesty shot how her husband needs full time care. I’m thinking specifically of those who want the truth about the hard aspects to be sanitised. I’ve seen arguments amongst them on Instagram. Where some admit that actually, a feel-good post celebrating autism doesn’t resonate. I love that. And that’s not who I’m referring to. I am referring to the angry, don’t speak ‘THAT truth, only MY one’ people.

See, the thing is, as much as you hate to admit it, there IS a reason it’s called autism spectrum disorder. (Another label some of you hate.) It’s not all the same for all of you. It can’t be! Just like MY Black experience is not the same as that of someone who grew up in a township then only invaded White slaves to clean the White woman’s house. Submissive and quiet, scrubbing the White child’s bathroom. (Remember, in our country, Blacks lived in townships and Europeans lived in suburbs), I can’t speak for her. I have HEARD how some are forced to give their masters sexual favours or otherwise lose their jobs. I have SEEN how desperate they are to find jobs seeing as most of us are unemployed… I can IMAGINE the degradation and sick feeling that overcomes her when he comes in to the room she’s cleaning.

But I can’t speak for her.

I can only speak for myself while KNOWING that in general, we live a certain shared experience, without knowing the specifics.

In the same way, dear adult autistics who dominate the social media world. You do not and cannot speak for all of you! Come on! Some of you can’t read or write, so how can you? Some of you have the IQ of a three year old. I’ve never come across any of you addressing that! Just like we neurotypicals can’t speak for the neurotypical world. We are all different!!

Stop shaming us as mothers for being real. If a behaviour is challenging, it actually IS! If we share that video online, we’re not doing it to shame our children or martyring ourselves. It’s the only way to show and give VISIBILITY to what autism is, just like you claim to do! Why is only one voice allowed?

I will say this, I don’t like all autism moms either. I don’t like the ones who want to force the world to deal with their children’s ‘challenging’ behaviour for no good reason. I don’t know the truth, but I first saw headlines about a struggling mom who was not accepted in a restaurant because of the noises her autistic child was making.

That, I could get behind. I don’t like the music they play but I ignore it. Ignore the noises too.

But then I read that actually, she had allowed her child to go to other people and start climbing on their chairs and tables!

No way! I don’t care if my autistic child is two or twenty two, there is NO way I’ll subject others to that level of behaviour. I disapprove of entitled autism moms. There’s a difference between acceptance of difference, vs acceptance of disturbance.

But back to you, adult autistics. You say autism is a gift. You say it’s not a disability, it’s just a different ability. What ability is that for some of you? You say we shouldn’t say ‘severe’ autism, so how do we describe some of you in a nutshell? How do we describe the ones who can’t communicate no matter what channels have been afforded them? What about the ones who spend 23 hours of the day awake? What about the ones who seem bothered and miserable all day long and nobody can figure out why? The ones who bang their heads, not caring about the pain and bruises? How do we succinctly make it clear that we are parenting children we cannot understand? How do we give a short intro to a world in which we so desperately wish we could take away our child’s discomfort but can’t because they can’t tell us what is bothering them?

There is a hospital in Johannesburg where some of you are housed. I told a friend about it but misspoke. Some of your autistic brothers and sisters have been locked away in that ward for up to 40 years! 😭Who will speak for THEM? How do we describe their world if we are only allowed to talk about how wonderful (except for sensory challenges and other neurotypicals ) their world is? How do we talk about why they have been left in that section if we are not allowed to describe their behaviours from our view as outsiders?? They can’t speak for themselves, does that mean nobody must at least try to? You’re certainly not speaking for them!

I’d rather an autism mom write about how their 15 year old is still in nappies than not. It might explain why the 60 year old autistic is in that Johannesburg hospital. Maybe his relatives just could not bear the physical and financial burden anymore. It also helps me if I’m a mom in the same situation to know I’m not a pathetic mother, it’s the disorder that’s pathetic.

We need all truths.

Can’t we all just get along? Don’t hate us. Educate us. And if we refuse to understand, then label us as individuals. Some I’ve dealt with truly don’t know any better.

We will not stop talking about being autism moms. Not only because it’s our right, but because we might be the closest thing to exposing our children’s realities. The realities of those who unlike you, will never have their voices heard or read.

If we shut up, our children shut up

If we shut up, we make other parents feel like they are shut up in a dark pit all on their own.

I’m sorry. Raising an autistic child doesn’t always feel like you’re raising a super hero. It feels like you’re raising someone whose world is broken and you are powerless to fix it.

And that goes to you too, autism moms who say we shouldn’t wish to ‘cure’ our children or wish that autism didn’t exist.

Believe me, the moms who have to lock their cupboard doors because their children just eat and eat and are unhealthy and DYING, definitely have the right to wish autism itself DIED, and left them a living child.

The mothers who’ve lost their autistic children who love water, to drownings, certainly wish autism would die, and I wish so along with them.

Autism will never be my children’s super power like some claim. I cannot find a silver lining in its existence in their lives. It cannot and does not sweeten their experiences more than a neurotypical existence would.

What autism CANNOT do is stop my heart from loving my children with all of its cracked pieces.

2 thoughts on “Dear Adult Autistics

  1. I hear your pain. And I agree with the general gist of what you’re saying. There is a percentage of the autistic community who has become militant about autism acceptance, and is either unable, or unwilling to see anyone else’s experiences. Much of this attitude typically comes from the trauma we have experienced all of our lives from a society that believes we are inherently defective and need to be cured of who we are. Of our autism. And of course, since many autistics have difficulty with Theory of Mind, and with seeing other people’s perspectives, I suppose it’s not surprising.

    However, this sort of attitude is still grossly unfair to those members of that autism community, both autistics, and nonautistic caregivers or professionals, who do mean well, who do accept us for who we are, and/or who simply don’t know any better than to operate with the information they have.

    As a community, as a movement, we need a balance between these two extremes, where we are willing to see the “greys”, and not just the “black and white” of the issue. To see the whole spectrum of experiences. For some of us, autism is extremely disabling. For others, it is moderately disabling. And for a minority (who seem to have a disproportionately loud voice in the autistic community), it is only a minor inconvenience, or a matter of mismatch between societal expectations, and personal approach. For many of us, the difficulties that are inherent to our autism are magnified by the ableism, the discrimination and oppression we experience by a society that still clings to a narrow, outdated notion of ‘normal’. Sometimes it can be difficult, or impossible to tease the two apart, and one gets mistaken for the other. (And for those of you medical, or scientific folks, I’ll give the technical term: there is an interaction effect between the two.)

    I agree with you that we do need all perspectives on autism and on autistics, or we are silencing and oppressing significant members of the community, and doing to ourselves that which we complain NT society is doing to us. Alienating potential allies in parents or professionals, or other nonautistics who simply don’t know any better doesn’t do anyone any good either. Given the appalling amount of ignorance that still seems to be out there about autism, and autistic experience in general, even within the autism community, we can’t afford to alienate anyone who needs to know information that can make all of our lives easier!

    I think everybody with any sense will agree, being a parent is challenging. Being a parent to an autistic child is extra difficult. As being a parent to any child with a disability comes with added challenges that parents of nondisabled children don’t experience. Wishing a child didn’t have to struggle is an experience all caring parents experience (from what I’ve heard). Wishing a child didn’t have to experience heartbreak is perfectly understandable. But wishing a child was someone other than they are, and trying to force them to become someone they aren’t, is destructive to their sense of wellbeing, and sense of inherent worth. And autism is something inherent to a person’s very being, very sense of identity. (Though I know there are some people who would disagree with me on that last. But any time I encounter someone who does, I always have to wonder how much internalized ableism they are experiencing).

    Now I’m off to write a blog post of my own about my issues with the idea of autism, or any disability, as a “superpower”, and how disturbing the idea of needing disabled people to be superhuman is.

    Liked by 1 person

    1. Thanks for your very thought out response. And you’ve made me think of something that I’ve blogged about in the past …the forcing of
      A child to be what they aren’t. Our neurologist is one of those. She never did respond to my email firing her.

      That’s another thing some autism moms do. I ended up leaving a group like that. I’d rather learn from you than from neurologists who want to create robot autistics and brainwashed moms.

      I’m coming to your blog!

      Liked by 2 people

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