I wanted to write about how Richard came home yesterday (Yay!) and how we took Emma to the Chelsea Market and how she insisted on wearing a pair of black patent leather shoes, turquoise tank top and pink terry cloth shorts with white hearts. I wanted to post a couple of photos of her so you could see for yourself how great she looks, but when I sat down to write I knew I had to write about something else.
I don’t want to talk about Joe Scarborough any more. Yet his unfortunate, ridiculous, careless and ignorant remarks, make it impossible not to mention him, because he has a huge following, because people imagine he knows something about Autism. Joe Scarborough’s remarks are indicative of a larger issue – ignorance and misinformation, which leads to opinions and a general consensus about Autism that is incorrect. One such commenter on an article about Joe Scarborough’s remarks, said he believed Joe Scarborough knew more about autism than he did because he has a son who is Autistic. And that is exactly why this is about more than just some asshole with a radio show. There are countless people spewing all kinds of venom on the radio and everywhere else. Much of it is dismissed. But when someone, whether it’s a pseudo celebrity or a talk show host with a large following says they have a child on the spectrum ears perk up. Forget that AUTISTICS are talking about what it’s like to be autistic ALL THE TIME and their words are almost never in accordance with what that parent with an Autistic child is saying.
So just to reiterate:
Autism is NOT a “mental health” issue. It is neurological, neither good nor bad, just DIFFERENT.
Joe Scarborough, (I know, there’s his name again) said in a statement he made yesterday, which was neither apologetic nor a retraction from his original inflammatory comments, “I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.”
Autism Speaks does NOT provide badly needed support to Autistics. In fact Autism Speaks is uniformly HATED by a massive number of Autistics who speak to that fact on a daily basis. If you google “Autistics who hate Autism Speaks” you will see more than a dozen pages of links addressing why this is so. (Really, I just googled it.)
While I’m at it, let’s dispel a couple more myths, something Autistics are doing ALL the time on their blogs.
Autistic people are not inherently violent.
Autistic people do not LACK empathy.
Autistic people are not all loners sitting in a corner banging their heads against the wall (That would better describe me right about now) until they can no longer take it and go on a murderous rampage.
Autistic people are not all depressed and friendless.
I’m depressed right now. But this isn’t about me, or how I feel, or anything else that contains the word, me or I. This is about prejudices and prejudices are always negative, reinforced by ignorance, ingested by those who believe they are being told the truth by someone who is more knowledgable than they are about something they know nothing about. This is how it works. This is how it has always worked throughout history, the demonization of a group of people whose voices are drowned out by the larger roar of ignorance and stupidity.
I refuse to end on this note, however. So here. Here are a couple of photos of Emma in the outfit she threw on to go to Chelsea Market yesterday evening. Because Em is one more example of what Autism looks like. Emma is inherently HAPPY. Emma is inherently SOCIAL. Emma is inherently KIND. Emma is inherently EMPATHIC. I’m trying really hard to follow her lead.
This is Autism. This is Emma.
Loved that as I took this photo a woman wearing black patent leather pumps and turquoise dress walked toward her!
“I can’t reach!”
- Autism, Assumptions and Perpetuating Misperceptions
- An Empathic Debunking
- Joe Scarborough On Autism Remarks: ‘Perhaps I Could Have Made My Point More Eloquently’ (leftbrainrightbrain.co.uk)
- Autism Speaks accused of disability discrimination (leftbrainrightbrain.co.uk)
If I could I would insert a photo of one of my pairs of red pumps, because let’s face it, we girls have to stick together! :0
I wish Joe Scarborough’s remarks were only a problem to the American public (which would be bad enough) but American media being far reaching it’s a problem everywhere. A big part of that problem is that for some perverse reason of memory no matter what they ultimately find out about the shooter those remarks will leave a lasting imprint. It isn’t helping much that there are both very well published authors like Simon-Cohen who want to make autism about a lack of empathy rather then different expression of that empathy and both defense lawyers and doctor’s willing to go on the stand and create the sort of hodge podge diagnosis the Norway mass killer wound up with. One would have to have completely slept through their courses on the DSM to think such a collection of labels was medically meaningful yet that doesn’t matter. What matters is that by tossing autism in some sympathy can be stirred up that isn’t there if you label someone a narcissist sociopath.
One of the issues the adult, autism community is wrestling with is what if it should turn out that the Colorado shooter really is on the spectrum. My response to that whether he is or not that based on what he said at the time he was experiencing a psychotic break so that would be the root cause in any case but that’s small comfort when we suspect that no matter what issues he had previously been labelled with some defense lawyer is going to be very motivated to make a case for it. Only time will tell though and life on the spectrum has enough challenges without worrying that once again the trend is to portray as as subhuman monsters of some variety. Incapable of the basics of what makes people human.
That’s essentially how it was when I was young. Lacking the linkage to things like rampage but the popular consensus had us incapable of emotions like love. I freely admit it was 23 years or so before I felt I had a handle on what love was and could apply it to a person (many of those years that reluctance would be more about my need to be certain what I was saying is true) Even in those years I was not without feeling, kindness. or empathy. Well sure empathy as measured on some scales I apparently lack but when I studied science there seemed to be more emphasis on making sure the results weren’t an artifact of what we used to measure it than there is now.
If Autism Speaks really spoke for people with autism then they should have been in the forefront of people leading the charge on this idle speculation but as one of their big funding priorities isn’t about support for autism but eradication of it I suspect this plays along with their goals.
I am depressed right now. Not because I am some sort of dangerous loner (okay I do prefer my own company but if being with people was as draining as it is for me so would anyone) but because I am still reeling from the catastrophic change in my life in the early part of the year. Also reeling from continually falling thought the cracks in a system that doesn’t quite know what to do with someone with both a mental health issue right now and a developmental disability. I saw my doctor, yesterday and he was as surprised as I was that it had managed to happen again but if you don’t fit neatly into some box you are doomed it seems to survive as best you can outside it while those who make the boxes somehow manage to blame you for your inability to fit neatly inside their programs, mandates and notions.
At 44 I am certainly old enough to know this is how it works. Not even just for autism but for most things and yet it still seems to manage to upset me, If I could get my life back on any semblance of the tracks it used to run along I would try harder I think to get into grad school (my original degree is in psychology) so I could be Dr. “Gareeth” and that then to the majority who don’t give first person accounts of autism much credence I could say much the same things and suddenly be believed. I don’t know if I will ever manage it though but on days like yesterday it seems more urgent.
“Dr.” is good then you could go head to head with SBC and cause a stir! Always so great to hear your thoughts, Gareeth. I am hoping your depression lifts.
Im not sure this part of this post. 2 week ago on 60 mim. It comes at the end after steve Jobs part That Says the some kids who were non verble kids when given a i pad with programs made 4 autism and they were so much smarter than ever imaged. Have you Seen It? btw in NYC!! Emma rocked that outfit!
I did not see it, but I heard about it. Yes, this is something that is said over and over again. Just because you cannot speak does not mean you have nothing to say or do not want to say something! I have read more than half a dozen accounts of nonverbal Autistics who learn to type and everyone is astonished by what they have to say. It’s as though we cannot imagine someone could be intelligent if they cannot speak! Yet anyone who has traveled to a foreign country knows this is not true. Thanks for commenting Tami. Are you in New York right now? We are leaving for Jerusalem Friday. Have a great time. Love New York!!
Ariane, off topic from your post, just wanted to let you know how it went today.
Basically, they do want to test her for everything they have at their disposal. They mostly want to test her for Rett Syndrome. She shows no symptoms, but I guess sometimes that happens? It’s more to just rule it out than anything.
The part that sucks is that anything they might find isn’t really going to help her in the short term. Say they find a gene mutation of some sort, well, there’s no meds or surgery or anything FOR any of it. Doesn’t mean there won’t be in the future, which is why it’s important to do.
Currently everything is hinging on them contacting Medicaid and finding out what exactly they will cover. We’ll schedule the MRI at her developmental ped’s office, which is in a hospital. They’ll do all the bloodwork at that time.
Feeling bummed and discouraged. 😦
Thanks for giving me an updated. I’m sorry. I found that period, when we took Emma to various doctors depressing as hell. I understand.
In the meantime, watch Wretches and Jabberers from Netflix! You absolutely MUST watch it. Amazing documentary about two men, Larry and Tracy, who travel all over the world trying to dispel the myths about nonverbal Autistics. Larry was sent to a mental institution when he was 8 and said, “I didn’t understand what I’d done wrong.” He was released finally, well into adulthood. Both men learned to communicate through typing as adults. Watch it. You will see.
Over the years I have known a lot of people on mailing lists for the spectrum who are non-verbal.Within the context of the list if the difference between communication and speech were not the topic you would not know. My own speech is unreliable still at my advanced age when stressed and I know a few people who did become verbal only to conclude it was better for their health and stress level just to carry on with non-speech based communication.
It’s tricky if your lack of speech itself becomes a stress generator delaying when the capacity might come back. When I was in hospital earlier in the year the nurse I had pretty well 5 days a week initially had a gift for doing and saying the exact wrong thing. It was strange as she was generally viewed as sweet and caring but she would engage in the strangest power struggles with me that pretty much ensured I would have no semblance of functionality at all her whole shift. It was another patient that solved it though. Her brother was on the spectrum and she went to another nurse and pointed out I guess all the ways I was being made worse by this and then someone on the 12 hour shift signed up for me and I was forever rid of the other one.
I know to the original nurse it must have all seemed like more of a choice than it was or she would have altered her behaviour. In some ways I have a lot of nostalgia for the days when I simply wasn’t viewed as verbal. Without the expectations or the judgements when I failed at something no one thought I could do anyway.
One good thing to come out of the whole current support fiasco is my doctor does think it will be possible to get me support specifically for autism despite speech and IQ usually being used to disqualify people. Apparently a functional assessment can be done that would just look at the degree of impact the actual autism has on my day to day life and supports put in place around that. I won’t hold my breath on it as I know a lot of what in theory is possible doesn’t happen but that would be good news as it would be more appropriate over the long run.
Only downside really is that the program is run by the same company I had a respite provision contract with for 24 years and I hope it doesn’t alter their glowing recommendation of me as an employee.
Gareeth, I am hoping the outcome of all of this is good. I’m relieved to hear that an assessment is possible and may help. Keeping you in my thoughts.
I found your post excellent, informative, and unbiased and I agreed with most of what you said. One thing I differ on has to do with Autism Speaks. While it’s very true that Autism Speaks is disliked by many individuals for varied reasons, there are many other individuals (such as myself) that it has helped. Just like you, I am the parent of a wonderful child who is autistic. For me, having the resources Autism Speaks provides has helped. Has it solved everything? No. But it HAS helped (e.g., the tool kits they provide, for example). If my son Max someday believes they don’t speak for him, I’m okay with that. Right now he’s four and I’m not. Right now any resource that helps me, helps him, too. Just my thoughts.
Thanks for reaching out. I’m including a couple of links to some Autistic posts, just because it’s good to know how all sides view something as controversial as Autism Speaks, but particularly because this is an organization that claims to “speak” for Autism and Autistics.
Thanks for these links–I just read them and intend to do more research into the controversy. What I’m sensing is that the needs of parents of small autistic children and the feelings/perspectives of adults who are autistic may be very different, but both are valid. When my child was biting and hitting himself because I gave him two crackers and not one, begging for me to hold him but recoiling from touch, and screaming for hours on end until he passed out, exhausted, as a mother I NEEDED help to help him. As a mother, I needed to SPEAK for him. He was three. I never wanted to eradicate his autism (Max and his autism are one and the same, where does one begin and one end, after all?), but rather to learn how to help. As with all my four children, there are many joys, but yes, there are sorrows. Again, different resources may help parents versus adults, but I strongly believe both may be needed, whether Autism Speaks is ultimately in the mix or not.
Regarding the “60 Minutes” profile of autistic people using iPads to communicate: one of the “helper” people who works with autistic clients said that communication is what makes us human, implying that nonverbal autistic people are therefore not human. At that point I turned off the TV and didn’t watch the rest of the show.
Yes, I can understand why. We have our work cut out for us!
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Bravo. And thanks.
I was on vacation when I heard what he said. I am so glad so many responded. Your post is one of the best ones I have seen so far.
Thank you so much Sue. Really appreciate it!
First, I love your post.
Second, I’ll admit that I’m confused by the “Autism is NOT a “mental health” issue. It is neurological, neither good nor bad, just DIFFERENT.”
I don’t know how to explain right now but isn’t the mind something that’s on the brain and created by the brain, doesn’t that makes the mind something neurological and isn’t mental anything about the mind?
I know the term is used more for mental illness but aren’t mental/neurological conditions all part of the “mental health” issues?
I always get confused with the line between mental and neurological since it’s all in the brain for me. Maybe what people call “mental health” is only for mental illness, I agree that autism is not a mental illness, not that there is nothing wrong in having those. Maybe I’m just too literal with mental/neurological/psychological/etc.
I find it confusing too! ‘Mental Health’ typically refers to “the psychological state of someone who is functioning at a satisfactory level of emotional and behavioral adjustment.”
I so wish people would realise we can speak for ourselves. I find the few autism parents I know in real life aren’t interested in anything I have to say, so the point of simply not engaging with me… as though I don’t exist. I can only think they might not accept their autistic child will grow into an autistic adult. Yet, I wish more than anything I’d been prepared for an autistic adulthood, rather than spending the first forty years of my life trying to be neurotypical.
Leigh, it is something that must change. Your writing is helping ensure that. Really appreciate your reaching out. I hate that so few are interested. I can only hope that will continue to change, that they will begin to see how much they are missing by not doing so.