No one likes to be told what they are doing is not the best way to go. No one likes it. It’s easy to take offence. It is totally understandable and reasonable to get angry and feel affronted. That kind of thing seems pretty logical, and one should expect that you will receive a less than friendly response when you are the one that is saying it. No surprise to be told where you can take your advice and stick it. The proverbial one finger salute should be the minimum expectation.
Parenting is a challenge, for everyone. Our little wonderful human babies come into our lives and we are overwhelmed with incredible emotions. A dichotomy of pure joy and raw potent responsibility sit together hand in hand. It’s a wonderfully fearful moment of realisation that there is this human person reliant on you for everything. Everything!
Throwing disability into the mix is another layer of difficulty on top of it. It makes everything just that more complex. Our world is one where disability, by default is considered to be a horrible state of affairs. The world places a premium on being able, “normal”, competent and healthy. Life in any other state than this is considered undesirable.
Autism is defined as a neurological disorder according to the health professionals. It is described by psychiatrists in their holy grail of books the DSMV. However, the neurodiversity paradigm says, hang on a minute, it’s not a disorder or a disease. It is neurological, absolutely, but not a disorder a difference. A rising tide of adult autistic people are advocating on this front. They are declaring it widely, loudly and with pride that being autistic is different not less and actually we know something about this because we are actually autistic.
This advocacy can take a bunch of different forms. It can be blogging, it can be making videos, lobbying medical organisations, charitable organisation. It can be scouring the internet for information about questionable treatments. Writing letters and giving media interviews. All of these are forms of advocacy.
One form this takes is by being members of parent support groups on social media. Most notably on Facebook. These groups range in makeup from just a couple of hundred people to a great number. One group I am a member of is over 50,000 members. Not sure how many are actually active but it is a very busy group. The topics that come up for discussion is vast and varied. The photos and videos posted a just as varied.
One thing that is a common issue in these groups is when Autistics speak up on issues there is friction. At times their opinions are discarded with an attitude that says you don’t speak for my child, or you are high functioning so you don’t know what it is like for my child who is severe, and many variant responses around those issues.
One thing that happens for me is I often get frustrated and at times angry at these responses. The difficulty of course is that communication difficulty is a thing that is always there for autistic people. It is present in expressive and receptive language. Generally an autistic means what they say and says what they mean. This may sound silly but it’s true. A difficulty is that as an autistic I will say something is wrong and that’s what I mean, the thing is wrong. It’s the thing that is wrong and not the person.
If I say for example that ABA, real ABA is abusive that’s what I mean, I mean ABA, not the parent, not the therapist.
On the other side of the coin, as an autistic person I see ranting about autism, hate expressed about autism, appeals for cures for autism, pseudoscience and dangerous biomedical treatments for autism. I see this and it is hurtful to me as it says an integral part of you is wrong and should be removed. It says I will risk everything even deadly diseases to remove that integral part of you.
On the face of it it would seem to be something of an impasse. That there is nowhere to go on this and maybe we should all stop slinging insults at each other. This is surely true to an extent.
I don’t throw insults, well I certainly don’t intend to and do not say things to hurt parents of autistic children.
So why do I do it may be a question on your mind.
To be clear it is true that if you have met one autistic person you have met one autistic person, indeed every autistic is different just as every human is different. So I don’t pretend to speak for anyone else’s child or anyone else period. I will not ever attempt to put myself in that place. I will however, advocate for them. I will speak the truth and provide information about autism, about being autistic, about bad treatments and myths.
I would love to say I will never get angry and say things in a less than positive way. To make such a promise or claim would be unwise and unrealistic. A promise waiting to be broken.
What I will say is, I am in no doubt that parents love their children and want the best for them. They do not want to abuse them or hurt them. The very fact that these parents exist in these groups is testament to that.
I speak out with passion because I see something of me and my experiences in those children and I want the best for them. I want to save them from the pain that I felt. I want to provide tips where I can to grasp the successes that I had and the ones I missed out on. I want these parents to see that autistic kids do grow up to be autistic adults.
I don’t ever want to offend you. I don’t ever want to hurt you. I want to see your autistic children grow up to be the best autistic adults they can be.