Guest Post – Dear Robert F. Kennedy Jr: Autism Is Not A Catastrophe

16 Apr

Guest post by Allison Garber

Dear Robert F. Kennedy Jr:

I’ll start by thanking you for your apology for comparing Autism to the Holocaust. That was good of you, since likening my child’s existence to one of the most horrific acts of mankind was pretty brutal.

Your apology, sadly, was not directed towards my son, since you went on to say, “I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families”.

I’d wager a guess that you struggle so hard with this because you don’t actually understand Autism. I’d also wager a guess that you don’t really care to understand Autism; instead, you prefer to believe that Autism is caused by vaccines and that Autistic people don’t have minds of their own. In fact, in your recent speech in Sacramento, you described Autistic children’s brains as being “gone.” It would have been nice had you spoken to any actually Autistic people before making these remarks, but I guess it’s more convenient to your agenda to paint Autism as the post-vaccine bogeyman who comes in the night to steal your children and ruin their lives.

While apologizing, you said that you you were struggling to find the appropriate expression to convey the “catastrophic tragedy” of Autism. I’ll be honest here; my struggle right now is to push aside my hurt in order to draft a response to you that is kind and impactful.

I won’t wade into the scientific facts that dispute basically every single thing you are saying about vaccines. Those who are much more educated in this field have tried to change your view to no avail, so my efforts in that regard would be futile.

Let me instead speak to you from the heart about how your words impact my family. My five year old son is Autistic. He’s a wonderful, energetic, smart, fun-loving boy. Being Autistic brings forth a number of challenges to his day-to-day life, but many of those challenges exist because of our society’s inability to take the time to understand him and the way his brain works, and therefore barriers and obstacles are continually put up in the way of his success.

You contribute to those challenges, Robert. Because of your beliefs and the beliefs of those like you, many people are unwilling to accept and embrace Autistic kids and adults. Your framing of Autism as a tragedy and a catastrophe directly impacts how people treat my son. You need to understand that. When you tell people that my son’s brain is “gone,” you make it impossible for them to accept him the way he is. You foster an environment where parents are afraid to let their neurotypical kids play with Autistic peers. Your fear-mongering means that employers will hesitate before hiring Autistic adults. You frighten people with the idea that they may one day be parents to an Autistic child.

My child is not a thing for you to hold up as some kind of warning or scare tactic. He is a person. And when you call him a tragedy, what you are telling him – and people like him – is that they are not worthy to be here.

I want you to imagine what it would be like for my son to someday read your words. I want you to picture him – a bright, thoughtful little kid already struggling to make his way through the world – reading and absorbing the fact that you and people like you think he is a catastrophe. Imagine telling my son to his face that his existence is the reason why families fall apart. Imagine telling my child that he is a mistake, a result of “something gone wrong”, and that he is not deserving of inclusion in his community. None of these are nice images, are they? And yet this is the message that you are putting out in the world.

The thought of my son internalizing that message is my greatest fear.

My hope, however, is that he’ll remember that he is loved, that he is valued, and that he is one of the greatest gifts my family has received in this lifetime (his little sister being the other one). My hope is that I will be part of a community that surrounds my son with so much love that there is no room for the words “tragedy” or “catastrophe.” My hope is that by the time he reads your words we will have made big strides in destructing the perception you’ve created about Autism.

What I want you to know is that we will make those strides.Do you know why will be able to make those strides? The answer is simple: because the fear and hate that you spread are no match for hope, love and inclusion.

I have never doubted my son. I’ve never doubted who he is, and I’ve never doubted what he has to offer this world. And I can say with certainty that no mater what he does in life, his legacy will be more positive and more rewarding and long-lasting than the one you will leave behind.

Kindest Regards,

Allison Garber

Proud parent to an incredibly perfect five year old boy

Allison and her son

Allison and her son

Allison Garber is a communications professional based in Halifax, NS. She sits on the Board of Directors for Autism Nova Scotia and is the mother of two awesome kids. You can follow her on Twitter at @allygarbs

Advertisements

22 Responses to “Guest Post – Dear Robert F. Kennedy Jr: Autism Is Not A Catastrophe”

  1. Helene Ambler April 16, 2015 at 1:30 am #

    A breathtakingly beautiful post in every respect – thank you.

    • Adeleida April 16, 2015 at 6:29 am #

      Can’t say it better than Helene – just want to echo her words, and add that the voice of love will always be louder than any other voice out there, drowning out anything in its way like rain on a tin roof.

  2. chavisory April 16, 2015 at 1:42 am #

    The problem is, though, that people like RFK Jr. can read this, can hear from actually autistic people about our displeasure, can be told and told and told about the damage that beliefs like this do…and keep believing that they’re not really talking about autistic people like us, or autistic people like your son…”real” autism in their view doesn’t include us. RFK could meet any of us, and say “But I’m not talking about people like you, I’m talking about [caricature of autism that exists only in my head],” and thus the myth in his head is preserved no matter how much real life evidence he ever encounters.

    He seems to be one of those people for whom any ability to have or voice an opinion on the subject of our own lives, disqualifies us from the right to.

    I don’t know how to fix it. I haven’t known anything or anyone yet capable of getting through to people with belief systems like this.

    • A Cranky Spider April 16, 2015 at 3:51 pm #

      I wish I knew how to fix it. Such things make life so much harder for autistic people and ruin the entire world and I’m AGAINST that sort of thing!

  3. Greg Smith April 16, 2015 at 3:35 am #

    Or you could be my friend who has a 33 year old autistic brother who is 350 pounds from eating everyting in sight and you’re never quite sure if you should walk into another room at their house because he might just be naked and jerking off.

    This article reeks of #NOT_ALL_AUTISM

    there’s more than a few share of autistc kids who have made their families lives a complete nightmare

    • chavisory April 16, 2015 at 4:35 pm #

      …and there are also non-autistic people with those issues.

      The very first thing I have to ask is was this person ever *taught* explicitly about things like boundaries and the rights to physical autonomy of other people. (And were his rights to those things honored. Because you can’t really effectively be making an argument that somebody has obligations not to violate the boundaries of others, but other people have the right to control *their* life and body.) Has communication been prioritized, or have people consistently assumed “he’s autistic, he can’t understand?”

      Like, you’re citing issues that are neither inevitable nor exclusive to autism.

      Kids tend to “make their families’ lives a nightmare” when they have little other way to communicate other than acting out. This is why we need communication other than speech to be taken seriously, not why we need to not exist.

    • Helen Krummenacker April 17, 2015 at 7:29 am #

      He still has a mind.

    • thebearpelt April 18, 2015 at 5:09 pm #

      Wow. “Not all autism?” Really? Comparing rampant ableism against autistic people to the “not all men” outcry from MRAs is so insulting, I don’t even know where to begin.

      And by the way, part of the reason things like that happen is because people refuse to teach nuerodiverse/disabled people, especially kids, sex education at all. So why would they possibly know when that’s appropriate if no one ever talks to them about it?

      Or do you just hate autistic people?

      • A Cranky Spider April 28, 2015 at 7:16 pm #

        He’s a human being who deserves respect. Something that people think autistic people, especially when they’re non-verbal aren’t entitled too. It’s dehumanizing for people to say, well this person is a complete nightmare. No, they are a person and they deserve respect and support and also sex ed would help instead of people getting embarrassed and not teaching the concept of things you do in your room vs things you do outside it.

  4. laurachurchillduke April 16, 2015 at 10:06 am #

    Great job, Allie!

  5. AMM April 16, 2015 at 2:39 pm #

    I don’t even know where to begin.

    1. If I were Jewish (or a Gypsy, or a member of any one of the other groups targeted by the Nazis), I think I’d be pretty upset to hear autism compared with the attempted genocide of my people. Even if we accept (for the sake of argument only!) the claims of vaccines causing autism, there’s a word of difference between deliberate murder and a rare, non-fatal side-effect of a life-saving treatment. What’s next? Are we going to say that seat-belt laws are “like the Holocaust” because some people who had seatbelts on die in car crashes?

    2. The “autism epidemic” is BS. It’s a typical media panic. I have yet to see any evidence that the actual _incidence_ of autism is going up. (It might be, it might not be.) Diagnosis, yes, but there are number of people in my family my age and my parents’ age who exhibit the exact same symptoms that my autistic son exhibits. They wouldn’t have been diagnosed as autistic because nobody’d heard of autism then. The diagnosis didn’t even exist in my parents’ generation. I also suspect that there are children being diagnosed as autistic who aren’t (it’s not that easy to diagnose, and I’ve personally experienced mental-health professionals who are slapping the diagnosis on who I _know_ aren’t competent to distinguish between autism and a bunch of other conditions.) We had that with dyslexia and with ADHD. (And of course some who should have been weren’t.)

    3. As you point out, Autism isn’t the end of the world. My son is autistic (Asperger), and while he was a bit high-maintenance, the biggest problems we had were with the adults and institutions who were handling him and refused to consider that they’d need to change their approach. School programs and summer camps and youth groups that were prepared to be flexible and adjust their approach had no problem whatsoever. And I can’t exactly say that his being “high-maintenance” is entirely due to his ASD — my whole familiy is high-maintenance, each person in their own unique way.

    BTW, my son isn’t the only autistic person I know, and even the more severely impaired ones I know are fine as long as you don’t insist on doing stuff with them that you know they can’t handle. (I was at a weekend event with the mother of an autistic adult in a group home where the person running it insists on putting them in situations she knows they can’t handle.)

    IMHO, this is just plain ablism of the worst kind.

    • thebearpelt April 18, 2015 at 5:06 pm #

      I agree with what you’ve said here for the most part, but want to point out that g*psy is a slur, and an incredibly insulting one at that. The correct term is Romani.

  6. melissaautisticfields April 16, 2015 at 9:31 pm #

    Reblogged this on Melissa Fields, Autist and commented:
    Robert F. Kennedy, i am an #ActuallyAutisticAdult who also has a blog on here. I am far from being the catastrophic tragedy you painted me as when you gave your speech in Sacramento, the capital of my home state that i live in. I hope you will please read Allison’r blog. Thank you.

  7. Amy April 17, 2015 at 2:14 pm #

    Amen!

  8. aqilaqamar April 17, 2015 at 6:52 pm #

    Reblogged this on Iconography ♠ Incomplete.

  9. thebearpelt April 18, 2015 at 5:11 pm #

    This is largely well-written, but I’m disappointed that the guest post is from a parent of an autistic child rather than an autistic blogger themselves. For one thing, there are plenty of us out there. For another thing, parents of autistics, frankly, get too much attention as it is. We need to actually showcase autistic people more often. I’m surprised that this was the choice and actually a little disappointed. I’m tired of hearing non-autistic parents yell at each other while our voices are often ignored.

    • A Cranky Spider April 28, 2015 at 7:18 pm #

      This is the sad truth. People are more likely to listen to parents about autism than autistic people. Really, it’s autistic people who should lead the discussion about issues pertaining to them or us?

      • thebearpelt June 5, 2015 at 6:42 pm #

        I agree completely.

    • Ally May 25, 2015 at 1:48 am #

      This is unfair. I wrote a post and asked my friend Anne if she would consider posting. She agreed. Anyone else could have done the same. And should, frankly. while I am not Autistic, I am the mother of an Autistic child, who I love and value very much. And with all due respect, I spend the majority of my time getting out of the way and amplifying Autistic voices. That said, I also have a role as a parent to create a safe environment for my child. I really resent you saying that this role is not important. My son is my everything, and he deserves two parents who will fight for him.

      • thebearpelt June 5, 2015 at 6:42 pm #

        I’m sorry you seemed to take this as a personal attack when my point wasn’t about you anyways. And, honestly, I do want to see non-autistic parents stop speaking for us. It’s great that you fight for your son’s rights, but you are not autistic. Your voice should not be more important than ours. That’s a simple fact. Autism activism should be led by autistics and I always see non-autistic parents get far more attention than autistics do. That’s what frustrates and disappoints me.

  10. Rebekkah April 20, 2015 at 8:02 pm #

    Reblogged this on freethinkers BLOGSPOT.

  11. rboyaj3 April 28, 2015 at 11:50 am #

    Beautifully written!! Thank you

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: