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Speaking for Myself

May 16, 2012

The following post is by CC, a regular reader and commenter who also has Asperger’s syndrome.

Imagine, if you will, that there’s a group called, say, Fatties Speak. On the surface, they seem to support Health at Every Size (HAES), and the idea that fat people aren’t freaks of nature, but rather people born into a different phenotype. Imagine, though, that its actual aim was not to reach out to fat people, but to their family members, to say that they understood their “grief” and that they knew what was best for these poor, sad fat people. Imagine that members of this group’s leadership gave TV and radio interviews, produced web videos, and, as a result, raised millions of dollars (in corporate sponsorships alone, including $12 million in donations through Toys R Us) to speak out against the epidemic of fatness and how it needs to be completely eradicated (not really a huge stretch).

That is exactly what Autism Speaks does to us. And by us, I mean the living, breathing human beings who happen to have some variety of autism spectrum disorder (ASD).

If you visit Autism Speaks’ website (autismspeaks dot org — I’m not giving them free trackbacks), you see some fairly innocuous stuff at the top, such as links or pictures of recent events. But in the sidebar you’ll see the following:

Um, okay.

According to the most recent figures available, the 1 in 88 number is true. In fact, diagnosis rates have jumped 23% in two years. But, as the NPR health blog rightly states, much of the increase is due to the fact that people are getting better at diagnosing ASDs. The diagnosis may be new, but behaviors are the same as always.

Thanks to the significant increase in diagnoses for autism and disorders under that umbrella (i.e., Asperger’s syndrome (AS), pervasive developmental disorder not otherwise specified (PDDNOS)), Autism Speaks has triggered a lucrative panic:

The rapid rise prompted calls to declare the developmental disorder an epidemic. “This is a national emergency in need of a national plan,” Mark Roithmayr, president of the advocacy group Autism Speaks, said at a CDC media briefing Thursday.


Sound familiar?

It’s become a buzzword designed specifically to sow fear.

But at the same press conference, the Centers for Disease Control and Prevention explained the increase as a result of “better recognition of the disorder by parents, doctors and teachers.”

For better or worse, ASDs are now in the public eye more than ever, and it’s helping laymen learn to see the signs. But, of course, the more people know, the less they need professionals, in theory, which doesn’t sit very well with organizations like Autism Speaks, which depend on donations for most of their budget.

I was diagnosed with AS comparatively late in life (not until I was about 27, when most ASDs are diagnosed during childhood). AS didn’t appear in the DSM-IV as a separate diagnosis until 1994, when I was 12, so nobody thought I might have AS until I met very good and smart psychiatrist a few years ago. I was verbal and had no language delays, so I couldn’t possibly have “classic” autism — the nonverbal, locked-in-one’s-own-world kind — and since AS wasn’t around when I saw my first shrink, I was diagnosed depressive instead.

AS was a phantom, a sort of bizarre anomaly found rarely in nature, a diagnosis of something just for weird kids. I could speak and sort of manage to do normal things, so I couldn’t be autistic, and for a long time that was that. Even now, doctors and family members tend to doubt me because there are a lot of things I can do.

It certainly won’t help matters, either, that the American Psychiatric Association, which publishes the DSM, has proposed folding AS back into “autism” and eliminating the AS diagnosis altogether. In other words, the DSM-V (the next installment of the reference book used by most psychiatrists and psychologists in this country) would not have a separate entry for AS. People being evaluated would either be “autistic” and therefore eligible for special services and assistance, or they would be “normal” and get nothing. I look and act normal enough where you would think that wouldn’t be a big deal for me, but it’s a very big deal. I can hold a job, I can hold a conversation and I can live on my own, so for many people, I’m “normal.”

I assure you, I am not.

And the reason I bring this up is because organizations like Autism Speaks are molding the narrative of what autism is. It’s like Jenny Craig telling us what a healthy weight is. Think about it: when most of you hear “autism,” you don’t think of people like me, do you? People who can hold a coherent conversation and a job; who are very bright if socially awkward?

No, most people imagine children, or at the very least damaged adults, locked in their own world, rocking back and forth, flapping their hands, maybe throwing poop around or banging their heads on something. You, or someone you know, probably hold a finite view of autistic people.

Some of you have met an Aspie or otherwise autistic person; some of you are Aspies or otherwise autistic; and some of you are Aspies or autistic, but don’t know it yet. And yet, I’d be willing to bet that most people, if they know anything about autism, know that it affects children. Autistic children become autistic adults, and that inconvenient fact isn’t mentioned very often. I know that in trying to find a psychiatrist who specializes in adult autism, I’ve come across a grand total of three in the Houston area. I see one of them on a regular basis, and the other two weren’t accepting new patients. I’ve been lucky.

Go back to the Autism Speaks website, if you would. Do you notice anything? Or, rather, the lack of something?

I do.

I notice two things. Firstly, a much larger proportion of the site’s photos are of families and autistic children. Seriously, comb the site. There are some photographs of adults by themselves, but compare that number to the number of pictures of winsome, tragic-looking children. It’s about three to one.

Secondly, there is absolutely nothing which details any kind of help for autistic adults or even very much discussion of autistic adults. It’s all about children and parents. There is a section on self-advocacy under the What is Autism page, but it is 1. short and 2. demeaning. John Elder Robison, the single autistic member of Autism Speaks’ board of directors, is labelled as a “self-described Aspergian.” Aspergian is another label, similar to Aspie, that is preferred by some people in the autistic community. If any of you can come up with a more dismissive way to describe a prolific author and intelligent scholar, let me know, ‘cause I can’t think of one. This wording sure seems to say that “oh, he describes himself this way, but we don’t! Isn’t it cute and quaint?”

It also describes the autistic community as fragmented and disjointed. Let me ask you this: if you’re fat, deathfatz, in-betweenie, or any other label we throw around, would you want a skinny person to tell you how to conduct yourself, or would you prefer to determine your own path, with your own voice?

This holds true for most adults, but not necessarily for kids. Children aren’t usually old enough or interested enough to read about their diagnosis and, as such, it’s left to the parent to read up and make decisions for their child.

And, oh, what decisions they’re faced with.

I’ll link to their site just once, for the sake of convenience. Right off, there’s a section called “Autism and Your Family.” Okay. Might be helpful; it’s obviously going to be a bit more difficult to deal with an autistic child. When you click on it, a big, ugly word is right there, front and center: grieving. When there’s a section called “Stages Associated With Grieving,” you have a pretty good idea what tack the page is going to take (Hint: An amazingly offensive one.)

How will I deal with this diagnosis?” it asks, following by the stages of grieving. It talks about the diagnosis as a “shock.” It speaks directly to parents, who are surprised and scared about the future. Right away, Autism Speaks hits parents where it hurts — right in the victim mentality. It becomes about them. It becomes about their struggle. It becomes about their patience and saintliness, about their magnificently sacrificial nature, to devote their life to caring for such a difficult being.

As someone with Asperger’s, I can’t articulate just how offensive this is. Having an autistic child is not easy, and I won’t pretend it is, but for every set of good, kind, patient parents who see their child as a blessing regardless of their neurology, you get the parents who spend a lifetime mourning the Normal Child they never had.

Trust me: we feel it.

I didn’t want to mangle Shakespeare, but I will: if you prick us, we bleed. If you poison us, we die.

But yes, right. Parental sacrifice. The good ones make the sacrifice and have good and bad days. The bad ones dwell indefinitely on how they’ve sacrificed so much to take care of us.

Apparently, parental sacrifice is so central to having an autistic child that it’s okay to talk about driving your autistic daughter off a bridge because you can’t handle the strain.

Apparently it’s okay for Autism Speaks to present autistic people as kidnap victims and suggest they are the cause of everything bad in their parents’ lives.

Not every autistic person is able to speak in recognizable language, but they can still communicate. None of us needs Autism Speaks to tell the world what we are or how they should treat us. None of us needs Autism Speaks to treat us like we are burdens, freaks, or causes for momentous grief.

Autism Network International puts out a newsletter which has some of the most insightful writing I’ve ever seen on this issue. Jim Sinclair wrote a piece I always loved, called “Don’t Mourn For Us,” and I’ll let him have the penultimate word:

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it — and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.

24 Comments leave one →
  1. vesta44 permalink
    May 16, 2012 3:13 pm

    This is one of the most moving posts I’ve read. I’ve always thought that parents who mourn the fact that their child isn’t perfect have no business having children in the first place – not just the fact that their child has AS/ASD, but that their child may be fat, may have Down’s Syndrome, or may have any other of a myriad of diseases that make a person considered “less than”. Every person who is born has something to offer the world in some way, and that deserves to be celebrated, nurtured, and encouraged, not mourned or hidden.

    • May 16, 2012 3:45 pm

      Vesta – we don’t all “mourn” the fact that our children aren’t “perfect” – we mourn for them because of how society views them. We mourn for them because they may not ever get to do things that every kid should get to do: go to prom, go out on dates, drive a car, even egg a house! It’s hard not to mourn if you’re in the situation that a lot of parents are in. A friend of mine has a son who is autistic, and he beats her up – frequently. To the point of broken bones, a broken jaw. Should she not mourn? Should she not be sad for what might have been for him?

      Yes, my son has PLENTY of things to be celebratory about, and I celebrate all those things every single day with him. However, just because I worry about what will happen to him when I’m gone if I am unsuccessful at teaching him the skills to live in this world on his own does NOT mean that I had “no business having children in the first place.” That is incredibly insensitive. If someone had told you that fat people have no business having children in the first place, would YOU not be offended?

      • May 16, 2012 3:49 pm

        You are wilfully misinterpreting what I am saying and what Vesta is saying. I clarified my position below. Just because you don’t engage in the self-absorbed, cruel kind of mourning doesn’t mean no parent does. Back off.

        • May 16, 2012 3:58 pm

          No, here I disagree – I saw that “parents who mourn the fact that their child isn’t perfect have no business having children in the first place” and that really pissed me off. Many people would say that my child isn’t perfect. I sometimes mourn that he will never be considered NORMAL by society. Perfect is subjective, and seeing someone say that a parent that mourns what could have been for their child is incredibly offensive. To me, my son is perfect. Is he perfectly able to take care of himself? No. At 6 years old, he can’t tie his shoes. He can’t dress appropriately for weather. He can’t open a bag of his favorite chips. He CAN beat the pants off any Nintendo 3DS game he chooses to play. He is a total perfectionist, getting so angry when he can’t do something right the very first time.

          Misinterpreting? Perhaps. I’m willing to admit that. And I am well aware that some parents DO engage in the “poor me’s” – but you are painting all us parents of ASD children with the same brush, it seems. Perhaps I’m wrong, but it’s my interpretation, and I’m able to express that.

      • vesta44 permalink
        May 16, 2012 5:01 pm

        Heather – I raised a son who was diagnosed with ADHD when he was in kindergarten (and I was blamed for his behavior because I was a single mother and his father was never in the picture). I don’t know how many times I was told he should never have been born, I should have never had had him, etc. So I’ve been there done that, and I love my son – faults, imperfections, genius, and all. I never mourned that he wasn’t “normal” according to what society considers “normal”, I never mourned that he wouldn’t fit into society, and believe me, there were times when I despaired of that ever happening – the times he came home from school with notes from his teacher/the principal because he’d been fighting, the times he got kicked off the bus for fighting, the bullying he got from other kids, etc. And I didn’t have anyone to turn to for help, no organization for kids with ADHD was there back in 1980 – 1990 to tell me how to cope, how to help him. I had to fly by the seat of my pants, all the while having my mother tell me what a shitty mother I was, how I should have either aborted my son or given him up for adoption. He’s 36 years old now, and an apprentice electrician, and I’m very proud of him. It’s been a long hard road for both of us, and it’s just been the last 8 or 9 years that he’s really been able to figure out where he fits in life, what he wants out of life.
        And what I meant by those who mourn having no business having kids – I meant the ones who are making it all about them, how it affects them, how it affects their life and not about their child and how it’s going to affect their child and hir life (believe me, I grew up with a mother that it was always all about her, everything that happened was all about how it affected her, even if it happened to me, or my brother, or my dad – it affected her and the effect on us didn’t matter at all to her).

  2. May 16, 2012 3:41 pm

    okay, I’m rather neutral about Autism Speaks, but as the mother of a 6 year old who has Pervasive Developmental Disorder – Not Otherwise Specified, I gotta say that I disagree with a few things:

    1 – I’m sorry that you take offense to the “how to deal with the diagnosis” section of their page. I disagree that it makes the parents into people with a “victim mentality.” Parents grieve with this diagnosis. I grieved for my son. Why? Because of how society will treat him. Because of how vicious his classmates might be. Because he might never experience life as a “normal” kid. He may never drive a car. He may never go out on a date. He may never hold down a job. He may never live on his own. If that happens to him, if he is dependent on me for the rest of his life, what will happen to him when I’m gone? I DO agree that Autism Speaks needs to focus more on ADULT autism diagnoses and what happens when you are no longer the marketable child. But I will say that I never thought about how this would affect me – just about how it would affect my son. Not to say that other parents don’t play the victim card, but not all of us do. If you got your diagnosis as an adult, that would explain the reason you didn’t grieve. You’d lived with it your whole life, but when you are faced with the possibility that your child, who you love more than your own life, may never say “I love you, Mommy”…you grieve, and I will grieve for him still, especially when I see how hard it is for him to make friends, not that he doesn’t make the effort (which is a big step) but that they don’t want to be around him.

    2 – the “self described” thing. If the man isn’t officially diagnosed, they are probably covering their rear ends and using a quote from the man himself, hence the “self described” moniker. I didn’t see it as “oh, look how cutesy” thing.

    3 – I’m glad that, even with their faults, that Autism Speaks exists because it gives the parents a starting point to find ways to help their child be able to function in society. For whatever faults you find with it, fine. That’s your right and your opinion. There are a few things that can be fixed, true, but complaining about it won’t change anything, unless you’re complaining to the right people – the people who run Autism Speaks.

    I didn’t hear about them until well after my son’s diagnosis, so I don’t particularly frequent the site. My boy is in a mainstream classroom, FAR ahead of his classmates in EVERY subject, and has a mild/moderate language delay, hence his PDD-NOS diagnosis instead of AS.

    I’m glad to hear that you were lucky enough to find someone to give you treatment, and I hope that it does what you want it to do. I just can’t totally agree with you because I AM one of the parents who grieves for her son, not because of who I wanted him to be but because of what society will make him out to be and what will happen to him when I’m no longer here to be a buffer for him. I’m hoping that I can teach him social skills and self management skills. So far it’s working. But, even as a person with an ASD, you don’t know what it’s like to be a parent of a child with an ASD. It’s two totally different worlds, and Autism Speaks is geared more towards parents of ASD children. So I will continue to support and help my child, as I occasionally grieve for what his future may hold if I am not successful in reaching him in a manner than he can understand and comprehend.

    • May 16, 2012 3:48 pm

      Let me be clear – grieving for how unenlightened society is makes sense to me. I personally can’t spend that time, because if I did, I’d start crying and never stop. What I strongly object to is when parents blame their child for not being normal – something I have seen firsthand. That is unfair, unkind and just plain cruel. That kind of grieving is self-absorbed and borderline child abuse, in my opinion. Grieving in the sense of being afraid of the future, in my opinion, is the sign of a good parent.

      That said, if Autism Speaks sold itself as an organization entirely devoted to the effect of autism on families, I’d be more tolerant. It doesn’t. It sells itself as the leading organization in the field. It sells itself as the last word on autism and autism research – which it isn’t. It’s an acceptable think tank of sorts where parents can cope. If Autism Speaks stopped holding itself out as something it’s not, I wouldn’t have so many criticisms.

      I am not a parent of a child with autism, it’s true. But I’m sorry, the world has listened to parents of autistic people for G-d knows how long. It’s time for more people to listen to us. If you do a search for “how many adults have autism”, there are no reliable figures. No one even bothered to count. Parents have a valid perspective, but it damn sure isn’t the only one, and it damn sure isn’t one that overrides mine as long as I -can- speak for myself.

      • May 16, 2012 3:53 pm

        And I agree with you that society needs to hear from autistic people. No, it’s not the only perspective, and I’m happy that you CAN speak for yourself.

        I’ve actually never come across a parent that blames their child. I suppose I’m lucky in that respect.

        You and I agree on quite a bit, and perhaps I was misinterpreting, but it just gets my hackles up to see a generalization. Autism Speaks does do good, if nothing else, it gives parents a starting point.

        I’m actually working on an autism page for my county because there is not one as of yet, and we need one.

        I didn’t mean to offend, but it is something that I feel passionate about – after all, I see autism every day, just like you do. I don’t look through it, but I look at it, and try to understand it. I love my son, no matter what, and it terrifies me to think about what will happen if I’m not successful at my job as a parent.

  3. nycivan permalink
    May 16, 2012 4:18 pm

    I am honored just to witness this respectful exchange of ideas and perceptions. I think the original post is “top notch” and I was educated by it. Thank you for the opportunity to be witness to this very important post and commentary.

    • May 16, 2012 5:10 pm

      I appreciate the kind words, and it’s true that maybe I could have been a bit more cognizant of the truly good and kind parents who do their best for their children, but it’s a subject I feel very strongly about. Autism Speaks may be a good place for parents, but I feel as though it does its best to mute my voice, and I won’t stand for that.

  4. Kat permalink
    May 16, 2012 5:31 pm

    If I grieve anything its living in a state where you have to fight for every scrap of help . My son is 20 non verbal and severely autustic . He is who he is and I love him for that .. but the world we live in does not get or even try to understand him .. when he was diagnosed autism was 1in 10,000 … If I told someone he was autistic . They and I quote you say ” oh he can draw ” wtf .. the world as come along was in awareness but still there is along way to go I. Understang . My son can become aggressive when overloaded with info . I canttell you how

    • May 16, 2012 5:47 pm

      “If I grieve anything its living in a state where you have to fight for every scrap of help”

      There, I am totally 100% with you.

  5. May 16, 2012 5:50 pm

    I echo the words of NYCivan, and how fortunate to have a forum like this to explore and express thoughts and feelings that are so personal and complicated.

  6. lordhellebore permalink
    May 16, 2012 7:06 pm

    “No, most people imagine children, or at the very least damaged adults, locked in their own world, rocking back and forth, flapping their hands, maybe throwing poop around or banging their heads on something.”

    Lord, yes! I’m just starting to think I should try to pursue a diagnosis (at 30), but I am held back by fear that I won’t be taken seriously, since even professionals think like this far too often. I try to tell myself that things like “You can’t be an Aspie, you can look me in the eyes/are too smart/can do ABC/don’t do XYZ” is something I hear because the people are just laymen, but I know, sadly, that it’s not true 😦

    I’m not entirely sure how I feel about what you wrote about the whole “grieving” thing. As the sister of a woman with DS and as a mother, I think this might have to do with parents wanting the best for their children – and since all parents are only human, to them, the best is what they know and can understand; and they want their child to be “normal” because it’s easier on the child and also on themselves. I think it’s a pretty common thing, since mostly, deviance from the “norm” is viewed and treated as negative in our society, but I also think that one has to overcome that.

  7. lifeonfats permalink
    May 16, 2012 8:03 pm

    I’ve been working at an early intervention program for almost a year where we provide therapy and teaching to infants and toddlers with developmental disabilities.We do not diagnose autism or autism related disorders. I had a mother cry over the phone this week because her 18 month-old son’s pediatrician is concerned he may have autism. I’m not going to judge or fault parents of very young children who are upset because their child is being labeled as “abnormal.” I have never had a parent make it all about them, it’s “what do I do in the best interest of my child.” I won’t deny that there are parents out there who use their children’s conditions to abuse and shame them.

    It’s a very typical human reaction, especially with how autism is treated and handled in the media.That’s probably the case with Autism Speaks. It seems they’re walking on eggshells, believing the best way to help parents is to make them victims. They may also feel that adults who have these disorders aren’t a priority because they’ve had enough time to cope and live with their condition. Again, I’m just assuming this.

    With time and support, many parents can ultimately overcome the fears over raising a child with special needs. The key word here is time. But if you’re expecting parents to automatically come out of the gate in full activist mode, I think you’re going to be disappointed.

    • May 16, 2012 8:16 pm

      I most definitely agree about not expecting parents to come out of the gate in full activist mode. I guess the best way I can think of to put it, though, is that there’s a difference between coping and grieving. Coping is healthy and completely understandable. Grieving is not.

      I’m just so sick of being treated like I have no voice. That’s why I wrote this. I’m tired of organizations like Autism Speaks alleging to speak for me and all autistic people, instead of just the people who seek them out. I have ideas about how to help us interact better with normal society, but instead all I seem to see are the parents/family members who have no idea how to handle us, so instead of trying to help us adapt, they label us as Weird or Different and put us in a box. It’s exhausting, it’s dehumanizing, and I’m sick of it.

  8. Fat Aspie permalink
    May 16, 2012 10:43 pm

    For us adult spectrumites, or parents of adult spectrumites, there is GRASP. ( Their board is almost entirely people on the spectrum. I love them.

    Re: self-described – there is a bit of a flap in the autism community between the formally diagnosed and the self-diagnosed; some of the formally diagnosed people feel like the self-diagnosed don’t have the right to call themselves aspies or auties – that’s when they put in the “self described” or “self diagnosed” label. I have seen a few self diagnosed bloggers indicate they are self, but they do it in the interests of full disclosure rather than differentiation.

    For Lordhellebore – there’s a saying – if you think you’re an aspie, you probably are. =)

    For myself, getting diagnosed was a relief, of sorts. It explained why I was so fundamentally different from everyone I know (except my undx’d aspie mom and my aspie friend). It told me I wasn’t alone. It was like a light going on. I had told my therapist that I had aspie traits, and he got out his DSM and went through the criteria with me. I never had a neuro workup, but I don’t feel it’s necessary.

    CC, thank you for writing this post. You put things very well from my perspective.

  9. May 16, 2012 11:00 pm


    I read the Facebook exchange first and was concerned that it might get personal here, but what has occurred is an incredible exchange on a complicated subject.

    It’s complicated because there are two perspectives with an equally vested interest in how society treats those with ASDs. I am certain that there are parents who CC despises, but I’m also certain that when presented with news of a developmental or physical disability, all parents mourn the uncertainty of a having an infant with a chronic disorder, ANY chronic disorder.

    It doesn’t matter at what age you receive the diagnosis. Down syndrome can be diagnosed in utero, while an ASD diagnosis can take years. And no matter at what age you receive that diagnosis, the parent will experience an uncontrollable flood of emotions that are totally natural and totally necessary to process the challenge that lies ahead in raising a special needs child.

    Having been involved with the Cystic Fibrosis Foundation, the vast majority of parents rise to the challenge and provide the best they can in their particular circumstances. And CF is a brutal disease with a median lifespan of the late-30s (according to the CFF site.

    And every night, their parents have to put a heavy, vibrating vest on their child and give them breathing treatments and fear for their child’s immunity. That’s the sad and difficult reality for CF parents.

    ASD parents have to cope with behavioral issues that we can’t even begin to understand, since the majority of the behavioral issue occur in the privacy of their home. And since there are varying degrees of ASD severity, the experience of each parent is unique and cannot be assumed. Even the mother who thought about killing her child, we don’t know how severe her child’s behavioral issues were. And it is not unusual for parents of “normal” children to have dark thoughts during terrible, terrible moments. Our five-year-old, Linny, had night terrors and I would be aghast if anyone but my wife knew the things I thought in the second hour of screaming and slapping and sleep depravity.

    Being a parent is hard enough with children who aren’t special needs, so I can’t even imagine what it’s like for those who have to learn to cope with an added challenge. And at the moment they receive the diagnosis, those parents are desperately afraid of what they imagine the life of their child will be.

    And tomorrow and Friday we will have two posts from the parents of ASD children. Karen and Shaunta each have autistic sons aged 5 and 18, respectively, and they will share their perspectives on raising a child with autism.

    As for CC’s post, I am proud to host this incredible piece on our site. I think that between CC, Karen and Shaunta, we will receive invaluable insights into the lives of those who are directly affected by ASDs. This week is all about digging deeper than the attention-grabbing headline that invites us to blame fat people for this terrible, horrible epidemic.

    I think that awareness organizations can play a vital role in how society views a particular special needs group, and it can also provide parents with the resources and information to navigate the road ahead of them. At the same time, if that organization is primarily interested in helping the “cute” segment of the special needs group, then there’s something wrong there.

    I was CC’s imaginary “proofreader” for this piece and took her up on her challenge to look at the Autism Speaks site and I tallied the number of photos by age groups (all estimates, obviously), and it really was quite noticeable.

    Here’s what I got just under the “What is Autism?” tab: 6 babies, 32 young children, 7 families, 9 young adults, 8 adults, and 9 experts. Now, I left out of my count the 1 photo that appeared 5 times of a woman I call Home Depot Woman.

    They really like Home Depot Girl and even include her on the page called “Sobering Picture of Young Adults with Autism.”

    And I agree with CC that they seem to go really negative with the information, the same way anti-obesity organizations make everything about obesity sound like the world is collapsing under the fatness. And having seen how hard it is for CFF to raise money because it’s fairly rare (just 30,000 people have it in the United States) it doesn’t get as much attention as other diseases.

    And I don’t think CC was at all trying to imply that parents who fear for their children and are saddened by the uncertainties and the stigmatism and the ignorance. I think she was speaking to that minority of parents who turn their child’s illness into a way to get attention and praise for being such amazing parents.

    I think the key to CC’s post is when she said “The good ones make the sacrifice and have good and bad days. The bad ones dwell indefinitely on how they’ve sacrificed so much to take care of us.”

    You know who you are and what kind of parent you’ve been. CC isn’t accusing anyone of otherwise.

    Thank you everyone for all the incredible conversation, and thank you CC for sharing this!

    • nycivan permalink
      May 17, 2012 12:46 am

      Shannon for President!

    • May 17, 2012 10:55 am

      Thank you so much, Shannon, for your help and also for your aid in clarifying my intent. I got a little upset with Heather because, from what I can tell (and I’m not that great at reading people!) she was angry because she thought I was tarring all parents with the same brush, and that’s just not the case. I personally know parents of kids with AS and “classic” autism who are just incredible – they have bad days, of course, but it’s almost never about “Look how hard my life is.” That’s what makes me angry.

      You said this and I think it was a slip of the tongue/fingers, but so many people do it – they refer to people with AS as “ill” or “sick”. I don’t like that term, and it’s how I feel that Autism Speaks views us – as “ill” or “damaged” or “broken.” I am not broken. I’m different, definitely, but I’m not broken. Anyone who thinks I am can go take a flying f#ck at a rolling doughnut. Anyone who thinks I and other autistic people can – with work and empathy – be productive and wonderful members of society, well, I’m on your side.

      • May 29, 2012 10:47 am

        I got upset with you because that’s how I saw it, but I’m willing to admit my error. I agree that autistic people need a voice for themselves. It’s badly needed, yes, and I’m lucky that my son is able to communicate fairly well. He was nonverbal until he was 3, then finally broke through the communication barrier. I worry about what will happen to him when he hits puberty in a few years and I worry about him for all kinds of things that may happen one day. I need to step back sometimes and just let him be a child and realize that things aren’t as bleak for him as I sometimes make them, and I sometimes need to step back and see that I read too much into things. Like I did here. Its why I took a while to respond again.

        I apologize if I got too heated. Are we good?

  10. LittleBigGirl permalink
    May 17, 2012 12:57 am

    Thank you for this post and the discussion.

    My older brother has AS and severe (as in off the fucking charts) OCD. The only thing worse than watching him deal with his illness is seeing how other people treat him. The disease did not break him, but the rejection, ignorance and discrimination he has faced has.

    I have struggled with mental illness (depression, anxiety, ADD, PTSD) since my teens and one thing has become clear to me: We must define ourselves, and our reality.

    We are different, not damaged. We are unique, not unacceptable. We need empathy, not pity.

    We need to manage, cope and adapt not be “fixed” or “cured.”

    We should not have to apologize for or defend who we are.

  11. May 18, 2012 5:07 pm

    I have Asperger’s Syndrome. I went to a Autism Speaks convention, before I knew who they were. The presenter had absolutely no problem, standing up in front of a room full of children with various forms of Autism, and discussing how they were going to prevent them from being born in the future. They had no problem telling a room full of children with Autism they were burdens, and should have not been born.

    Autism Speaks claims to care about families with children who have Autism, they are lying. They act as if the person with Autism is less than human, and only focuses on how the parents and the siblings (presumably Neurotypical) suffer. They are a coddle organization for parents who have children on the Autism Spectrum.

    Now, I understand people might be ignorant as to who they are, and think that they’re doing a good thing to support them, or that they are there to support them and their child on the Autism Spectrum. There are parents who are addicted to hearing they are a martyr on behalf of their child with a form of Autism, it is Autism Speaks who provides support for these types of parents.

    They take advantage of parents who want to be told there is hope their child can be “normal”, the sad fact is that these parents don’t realize they are doing immense damage to their child and are incredibly selfish by acting as if they never are good enough. I knew a father like this, he went to countless quacks who were more than willing to take his money, to tell him what he wanted to hear. He’s in complete denial that his son has a form of Autism, he’s immature and like a child who believes if they hope enough, and wish hard enough, their “real” child will come back to them.

    This is the core of Autism Speak’s campaign. I’ve heard of them leading parents in chants where they sing that they’ll defeat Autism, and call on the powers of voodoo. It was a part of one of the I Am Autism YouTube videos. I’d look it up, but I can’t bring myself to hear a minute of that awfulness without cringing. Autism Speaks leads parents in sing a longs against the big bad Autism,

    The problem is they are catering to these parents, who seem once they find out they have a child with Autism, revert to magical thinking and childish behavior.I can understand this as a coping strategy for awhile. Autism Speaks instead of seeing this as a part of coping that shouldn’t be encouraged, as something to encourage so they can get money.

    The reason Allison Tepper-Singer was able to say she’d wish she could drive her Autistic child off a bridge with her, is because Autism Speaks above everything else, is about treating parents who have children with Autism, as if they are children themselves. Indulging them in sing a long songs, telling them how they suffer and nobody understands, convincing them they’re poor poor babies who didn’t deserve to have a child with a form of Autism given to them. You’ll see that parents who do deeply care about their children with Autism, don’t participate in this nonsense after they realize what it’s for.

    Autism Speaks preys upon their view that Autism is a tragedy, and keeps plugging away at conveying it as such. Keeping parents of Autistic children giving them money, to go to a hug convention, and be told that they’re amazing, when parents who are amazing care for their child with a form of Autism no matter what. They don’t go to places, where they are coddled and hand held, because they are adults who understand having a child isn’t a guarentee you’ll get a perfect Barbie or Ken doll child. It’s a support group for parents who simply aren’t adult enough to handle having a child that is different.

    I’m sorry this has become such a long post, but I’m trying my best to convey, how disgusting it is that children with Autism who truly do suffer from living in a society that is intolerant and cruel towards them, are ignored in favor of supporting grown adults by treating them as if they are in need of special support. It’s not only insulting to parents of children with Autism Spectrum Disorders that do rather than hide under the covers, and hope the big bad Autism will go away. It is putting children with forms of Autism in danger, because Autism Speak’s cult like agenda does convince parents that the only answer is something drastic like driving off a bridge and killing their child with ASD.

    Let me explain, that by telling these parents that they can completely age regress to the behavior of a 3 year old because of the trauma of being born a imperfect child, they are encouraging the parents to think like 3 year olds. When your 3 you can claim the boogeyman is coming to get you, but you’ll have a parent that offers the perspective that it’s not real. Nobody is telling these parents that acting as if their child’s ASD is a boogeyman, that it’s unrealistic. Instead they keep building up the drama of how the parents suffer, how it’s the fault of their child having Autism, and the notion that if they sing their little songs and wish upon a star really really hard their child will be normal. In case you have haven’t figured it out by now, the concept that people are putting children at risk by taking advantage of weak parents and programming them to think like scared children, disgusts me.

    I have had to face adversity since my first day at school, I’ve had to cope with things that would break many Neurotypical children. I didn’t get any babycoddling, and I would be offended if someone suggested I needed it because I have Asperger’s Syndrome. I have more strength in my pinkie, than these supposed adults who pay money to go to a Autism Speaks convention, having their little storytime, juice and cookies, and then lead into spooky songs about the big bad Autism. That is more than pathetic, it’s like what business do they have in having children if they are children. That’s what the real problem is here.

    It’s hard enough having a parent who is immature and selfish raising a Neurotypical child, let alone one with a form of Autism. Instead of supporting their kids, they’re going for a crying kicking screaming fit against Autism because if they aren’t constantly told that they’re being really big boys and girls by coping with a child who has a form of Autism on a daily basis, they’re going to pout scream and stomp around until they are paid attention to. These aren’t parents who can even function, without constant praise, their children have to deal with bullies, teachers who are abusive, and then come home to parents who talk about them having Autism the way a pouty child talks about how they hate broccoli? These children deserve better, than parents who are so pathetic they have to go to a group kindergarten, because having a child with a form of Autism is so bad.

    I hope you understand why I’m ranting and what I’m trying to convey here. Children who grow up with forms of Autism have to deal with adult life and situations earlier than Neurotypical children. The last thing they need is to come home to parents that they need to be a parent to, and understand because they have to go to the latest thumb-sucking Autism Speaks rally.

    These children are going to have to grow up very quickly, because they had the unfortunate position of being born to children in the bodies of adults. I absolutely have no respect for a parent, who thinks that coping by going back into childhood, while their child is having to suffer through theirs. It is not just selfish, it is neglectful, and it is abusive. No, I’m not saying every single parent who supports Autism Speaks is like this, they may just not be wise to what they’re being sold. For the parents who stay, and convince themselves that the support their getting is more substantial than preschool time, they need psychiatric help. It is unfair that their child should feel they are lesser, when it is the reality their parents weren’t adult enough to be responsible for them. That while they’re dealing with the real world, their parents are hiding behind Autism Speaks’ huggy time baby has an emotional boo boo conventions.

    That son I was talking about, his father still is dragging him around as a pity token, paying people to tell him he’s a big brave boy, and they can help save his son from the mean old dragon. I told my mom, who for some reason still remained friends with his wife, that he was beyond pathetic. It’s the children who suffer from Autism Speak’s “understanding” that having a child with a form of Autism, will be so traumatic that all the parents will be able to do is have hour long crying jags, self comforting rock sessions, and need to come to their group meetings to get a coddle. They are making it manifest destiny that these parents become as stereotypically Autistic as Autism Speaks believes their children to be. Why is this organization which destroys the functionality of parents, or feeds their addiction to be pitied and told they’re martyrs, getting funding? Would we fund Jim Jone’s cult too, if they told people they were curing Autism?

    • May 18, 2012 5:20 pm

      I have a lot of feelings about what you’ve said, but in a nutshell, you’re right, and it makes me want to cry. Because I couldn’t find resources to back up a lot of these things, but I know they’re true. I linked the I Am Autism video because I wanted people to see it, to realize the shit we have to put up with on a daily basis from this organization that claims to speak for us. For everyone who was yelling at me and accusing me of tarring all parents with the same brush – Jackie is talking about the type of parent I was actually speaking about.

      Autism Speaks preys upon their view that Autism is a tragedy, and keeps plugging away at conveying it as such.

      That, in a nutshell, better than everything I said, is why I hate them. I am not, nor have I ever been, a walking tragedy. Neither is Jackie. Neither are Shaunta or Karen’s children. Nor should we ever have to feel that we are.

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