Autism, Children's Health, family, Mental Health, Parenting

I’m Autistic — And This is Why You Need to Know

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This may just be my opinion — or it could be the tip of the iceberg on a much grander scale. But I really feel that the autism awareness campaign that’s been going on for the last 10 or so years hasn’t accomplished much. I may even be going so far as to call it a failure.

Why? Well, since my oldest was diagnosed on the spectrum about a decade ago, I’ve still had to (repeatedly) inform several of his teachers/guidance counselors/school psychologists/social workers of what this actually means. They don’t understand the real life implications of altered sensory perception, or heightened/decreased emotional responses, or for-the-love-of-pete-just-leave-me-alone moments. A lot of people don’t comprehend what’s beneath the labels.

It certainly didn’t help me to realize that I’m on the spectrum myself. It took me reading a memoir written by a woman with Asperger’s for all the pieces to fall into place.

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So, why has all this momentum towards education on autism apparently fallen on deaf ears, or simply not reached people? Why am I 37 years old and still formally undiagnosed? I can’t even find a doctor or psychologist in my area who works with adults registering symptoms on the spectrum.

Well, there seem to be a few reasons. One: There simply isn’t the motivation in our society for people to learn and accept differences. Yeah, those of us who are aware of the importance of this are still shouting it from the rooftops — and I truly pray we never lose our voices, because our cause is worthy, and necessary, and we can’t give up the fight just yet.

Two: People don’t have an accurate depiction of autism. Even many of those in the know (well-informed parents, specialists, etc.) aren’t aware that this is not a “problem” we’re facing for the first time ever in the 21st century. Some of the broader-minded researchers are finding that most likely autism has been around for at least a couple of centuries, and that lots of people in our past (among them Albert Einstein and Lewis Carroll) were probably autistic, but the medical communities of their time didn’t know that, or enough about the spectrum to be able to diagnosis it. Children who are children now, on the spectrum, will 98% likely be on the spectrum their entire lives. This is not a bad thing. It’s just a fact — one that society really needs to wake up about.

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Three: People don’t have an accurate perception of the people who live the spectrum. And unfortunately many people don’t want to change their ideas about autism. The idea that autism is a “medical condition” rather than a state of being is incredibly damaging. It keeps pushing stereotypes and treatments that hinder progress in areas like sensory experiences and emotional coping mechanisms, where we really could use some growth (both ASD-ers and NTs).

So, what we do about this situation? Well, I think it’s about time we started asking people with autism what we need — instead of “normal” people determining it for us. Yes, there are many very well-meaning NTs out there, who have done a whole lot to advance research and acceptance, and I don’t want to discount their efforts by any means. But we need to go further, deeper — we can’t just keep up the lip service of “differences are okay.” We need a world with empathy, with true tolerance — a world where my youngest son won’t be encouraged to think of his older brother and mother as “a condition to be fixed.”

We are human beings, too. We are just as valuable, just as needed in this civilization, on this planet. We do not fit any one human-defined category. We are varied and have different strengths and obstacles and challenges. We are not just a medical curiosity. We are people. And the rest of the world needs to start saying that.

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5 thoughts on “I’m Autistic — And This is Why You Need to Know”

  1. I think I read that your son likes more scifi type books? If so, I might have a recommendation for you (for him)! There is a series called Young Wizards by Diane Duane which is a mix of Fantasy and SciFi and in the 6th book in the series has an autistic character! That character also appears in the books after that. If you do buy these books I highly recommend the New Millennium editions (these can be found on ebooks direct and there was a 50% off sale going on last week for them and they do go on sale semi-regular) as the first edition the autism portrayed was not the best or most informed, but Duane listened to her readers and has vastly re-written the books and updated them.

    Autism is one of a number of good examples that show doctors until very recently only really studied how things are in white boys/men. A friend of mine has autism and had to go out of her way to find a doctor and pay for a diagnosis (in a country where you don’t pay for medical care). In her support group for adults with autism 100% of the men were diagnosed before they were 10. !00% of the woman were diagnosed as adults. That isn’t even exaggeration. DOctors just don’t know the signs in girls and if they are supposed to be experts on it, how are (the so-called) ‘common’ people supposed to know and understand? Whenever someone argues with me about how doctors don’t do this (only focus on male symptoms of things) I like to ask them this: what are the symptoms of a heart attack in females? Because they are not the same as the ones you know. (for the record, its basically anything weird from the hips to the shoulders (tightness of breath, acid reflux, pain, etc), including, I kid you not, a sudden sense of impeding doom). With autism, the symptoms for boys are typically the exact opposite of the symptoms of girls.

    Also, I hope nothing in my comments has offended you in any way, just hoping to write a semi-insightful comment/discussion, but I;m no expert in autism, just slightly educated on the subject. I know you likely know all this already since you and your son are living with it.

    Liked by 1 person

    1. No, no offense at all – this was a very insightful comment – and thank you very much for letting me know about this series. I’ll (try to remember to) look into it (soon?). I really appreciate hearing that I’m not the only one having these sorts of experiences, because it really helps me to know that what I’m going through *is* the truth. (Know what’s even worse than feeling alone because you’re “different”? Being told what you’re experiencing isn’t “real.”)

      Anyway, thank you again!

      Liked by 1 person

  2. YES TO THIS. I think I might’ve mentioned to you that ASD runs in my family and honestly it’s so misunderstood and I’ve become so much more aware in the last 2 years. One thing that absolutely frustrates me no end is when ASD is put into the mental illness category in books…like, no. And I hate anything to do with “cure culture” because Autism is not something that needs curing. And it’s doubly hard for girls to be recognised…which is so sad and unfair. And I think, too, the fact that it can be a bit of an “invisible” disability is why NT’s so often ignore it? Or doubt it. So I hear you and I’m so glad you’re blogging about this and raising true awareness. ❤

    Liked by 1 person

    1. THANK YOU. I’ve received quite a hit from the local educational and religious community, indicating that autism and all its symptoms are “problems that need to be resolved.” Rather than looking at things that actually get in the way (for example, lack of sleep), and concretely working on those, and then just promoting acceptance for the “quirks”. This has been a major fight, and we’re only barely into it, unfortunately. But it needs to happen; it’s beyond time.

      Like

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