The 5 Scariest Autism "Treatments"

Emily Willingham, a contributor to Forbes, recently wrote this article.

It is frighteningly titled "The 5 Scariest Autism 'Treatments'"

And goodness, it sure is scary.

Honestly, the 'treatments' Ms Willingham writes about are really shocking and disturbing so I'm not going to detail them here.  I linked above to the article if you would like to know more.  Essentially, what Ms Willingham uncovers is that the 'treatments' people have used (possibly with good intentions) in order to "cure" Autistics are extremely dangerous and can cause permanent harm or even death.  That's terrifying to me.



I don't believe that Autism is something we need a cure for, but I do agree that some Autistics function better with certain interventions (like medication or ABA).  I know I do, and I don't think that makes me any less Autistic or any less human.  Regardless of your opinion -- and I know that as soon as anyone mentions "autism treatment" or "autism cure" there are bound to be people riled up -- my public service announcement is:

Please be educated and, above all, please be safe.

I Will Vaccinate My Children

I will vaccinate my children.  I will do this because I want my children to be healthy.  I will do this because I want my children to stay alive.

Vaccines don't cause autism, and yet there are so many people out there that have bought into this myth and that's incredibly frightening to me.  Suddenly, now many kids are getting these illnesses that were unheard of ten years ago.  Suddenly, kids who are immunosuppressed are at risk around the increasing number of their unvaccinated peers.

This is a great quotation from Johanna Holmes on this pro-vaccination website.

"Indeed, there are few choices in the field of parenting that have stronger, clearer-cut evidence in support of them. Other parenting decisions are burdened by conflicting recommendations and may vary in different communities with different traditions. There is no such conflict of professional opinion regarding the science of immunization. Every single major medical and public health organization worldwide stands in unanimous agreement regarding the science and value of routine immunization. In the case of such clear scientific consensus, ambivalence seems driven more by fear than by fact.

"To my fellow parents who choose mindfulness, I tell you that you are correct: the small choices that you make do matter. They matter a great deal, but perhaps not in the way that many in the mindful parenting community believe they do. A three-month delay on an immunization may feel safer, but this delay is not the difference between a developmental disorder and normal development. It may, however, be the difference between pertussis and no pertussis. Measles or no measles. Hib meningitis or no Hib meningitis. This we know."

Of course vaccines have risks.  Some people can't get certain vaccines due to allergies, for example.  Some vaccines can cause nasty side effects.  But I really hate it when people choose not to protect their children or themselves simply due to ignorance.  I hate it when people choose not to vaccinate out of fear.  Johanna Holmes even discusses this in her article; she says:

"Small choices, done and undone, make all the difference in the world. By all means, ask questions regarding immunization safety. Educate yourself, immerse yourself in the science, the evidence, the documented risks of immunizations and of the diseases themselves. You owe it to yourself and to your children to ask the hard questions."

Autism is not the end of the world.  Having an autistic child is not the end of the world.  But I will accept if that's frightening to some people.  I know the parents who choose not to vaccinate because they're afraid of autism have a very real fear, be it justified or not.  Not all parents want autistic kids, and that's fine, I guess.  But I'd argue that all parents want healthy kids.  So vaccinate your children. Keep your children healthy.  

Jenny McCarthy & Crap People Say About Autism

I don't watch The View.  I'm not in their target audience.

But I recently learned that Jenny McCarthy is going to be a host on the show.  That's concerning because -- even though I'm sure Jenny McCarthy has an actual career in which she does actual things, all I have ever heard about her is that she staunchly believes that autism is caused by vaccinations.

This article -- appropriately titled "Jenny McCarthy's Pseudoscience Has No Place on The View" -- explains the conundrum many of us in the autism community are facing right now.

Basically, McCarthy's son was diagnosed with autism.  She believed it was caused by childhood vaccinations.  She's now an outspoken "advocate" about how her son has been "cured."  You can read all about that here.

In truth, there is absolutely no evidence that vaccines -- or anything, really -- "cause" autism.  Autism is just a thing that happens.  In fact, the myth that autism is caused by vaccines was deemed an "elaborate fraud" by researchers.  And yet, this is a myth that is still perpetuated by people like McCarthy, even to this day!

Spreading pseudoscience to an uneducated population is incredibly dangerous.  This particular brand of pseudoscience is particularly frightening because 1) Vaccines are incredibly important; and 2) This "education" about autism breeds nothing but intolerance toward Autistic individuals and perpetuates the notion that autism is something that needs to be "cured" or eliminated all together.

I hope The View doesn't let Ms McCarthy discuss this subject on national television.

"Autistic" is NOT an Insult

So I've considered linking to this article for a while.  When I first read it, it was kind of shocking to me, but also, unfortunately, not shocking enough.

The stories mentioned in this article have all had pretty substantial news coverage and I'm sure you've heard of them.

However, I'm still going to offer my two cents on this one.

In a song released recently, the artist Drake -- whose music, I'll admit, isn't my "style" and I've never really paid much attention to it -- uses "autistic" as an insult.  (The article linked in the above paragraph has the lyric in context of its verse in the song if you would like to see it -- I'm choosing not to post it here because it basically seems really offensive to me... it has a lot of words that I'd rather not use).

Um, excuse me?!  "Autistic" is not an insult!

I'm sure this, like the debate over the r-word, will have people crying out that using "Autistic" in this way wasn't meant to be hurtful and people should be less sensitive or whatever argument they're going to use.  But that argument is nonsense to me.  Because regardless of how it was intended -- I'm sure Drake wasn't purposely trying to insult a whole population of people -- I am offended, other Autistics are offended, parents of Autistics are offended, friends of Autistics are offended, loved ones of Autistics are offended...  The list goes on and on.

I think it's pretty well known that the r-word is offensive and I think most people steer clear of that nowadays.

But seeing "Autistic" as an insult really shocked me.  It really did.  Because "Autistic" is my identity.  "Autistic" is my diagnosis.  "Autistic" is such a big part of who I am and something I feel proud of.  It took me a long time to feel proud of autism and now that I do, it's like this line in this song could theoretically reverse all those steps forward that autism self-advocates have taken in recent years.  Using the word in this context really does "perpetuate the stereotype that individuals with intellectual disabilities are worthless and stupid" (to quote this article).

We Need Neurodiversity

I love this quotation from Louise over at Bloom: "Neurodiversity suggests that there are benefits to brains that think differently."

I agree.  

Louise goes on to review this article, which discusses the neurodiversity movement and how neurodiversity is an asset in the world we live in.  We've all heard that the world would be incredibly dull if we were all the same.  We all know that life is more joyful with different perspectives and different ideas.  
Here's a quotation from the article that focuses on some positive attributes that some Autistics have:
"Autistic people, for instance, have prodigious memories for facts, are often highly intelligent in ways that don’t register on verbal IQ tests, and are capable of focusing for long periods on tasks that take advantage of their natural gift for detecting flaws in visual patterns. By autistic standards, the “normal” human brain is easily distractable, is obsessively social, and suffers from a deficit of attention to detail."
Of course all these traits aren't relevant to all Autistics, but I'd say that most of us feel at least some of these qualities apply to ourselves.  Whether we are verbal or non-verbal, "high-functioning" or "low-functioning," or any of the other labels people feel the need to attach to autistic individuals, I think we all - at least in some way - mirror parts of this description.  

We all know that being autistic isn't the easiest thing in the world.  Autism makes life harder for a lot of people.  The Wired article briefly mentions some of the struggles - like chronic underemployment and in many cases unemployment - that are faced by Autistic adults.  But every once in a while, I come across amazing quotations like the ones above, quotations that make me feel proud of my neurodiversity.

My Small Effort to Spread Positive Autism Awareness

I like this quotation from an excellent article in the Pittsburgh Post-Gazette: "Let me be clear -- autism is not a disease. Autism is a congenital variation in neurological structure -- and a lot of us take pride in our difference. We have our own heroes, leaders and traditions. Those of us who struggle with spoken language often participate seamlessly in the electronic conversation within our virtual clan. The digital revolution has allowed us to find one another and build supportive social institutions of our own. A few forward-thinking academic programs study our world as an independent minority culture."
Autism is not a disease.
Autism is a congenital variation in neurological structure.  
[We] take pride in our differences.  
I think those are the three things that first jumped out at me when I read this.  
It's Autism Awareness Month, and in my own small effort to spread some positive awareness about autism, I'm posting these three facts about autism and Autistic culture and I'm also asking my close friends to share these facts -- and others too, of course -- with the neurotypical community in order to tone down the alarmism and hate those uneducated about autism have a tendency to hurl toward us.  
It might be Autism Awareness Month, but unfortunately, this month of "awareness" seems to be more directed by neurotypicals trying to "cure" Autistics than by the Autistics themselves, Autistics like me, Autistics who accept that there are some challenges that come along with autism but are proud of their neurodiversity and the special gifts autism has given them.  
I don't have a disease.  I don't need to be cured.  
I have a congenital variation in neurological structure.  It makes me unique.  I add neurodiversity to our world.  
I take pride in my differences.  I take pride in my accomplishments.  I take pride in my confidence.  I take pride in sharing my experiences.  I am a proud Autistic.

Autistic and Female

Emily Willingham wrote a very interesting article about girls/women and autism a few months back in Forbes magazine.

I particularly liked this quotation: 

"The girls’ ‘protection’ might not come from protection against autism. Instead, it might come from being autistic in a different way from boys, a way that clinicians have yet to recognize, a way that leads researchers unknowingly to exclude autistic females from studies. It might not be that girls are better at “hiding” behaviors, as some suggest. Instead, their behaviors differ from those of autistic boys in ways that researchers are just beginning to understand."

The phrase "being autistic in a different way" jumps out at me.  

I was lucky.  I was diagnosed with autism at a young age.  Many Autistic girls are not as lucky as I was.  Many grow up feeling misunderstood because they have no clear understanding of what makes them unique.  I know I used to be lonely, before I understood why I was different.  I know my parents used to worry that there was something "wrong" with me.  My diagnosis changed all that.  My diagnosis was a definitive answer to the puzzle we'd been trying to solve.  

My heart goes out to all my Autistic "sisters" who are still trying to understand the beautiful mysteries that make them unique.

Autistic People Are...

As part of the Autistic Flash Blogs project - I am trying to highlight the fact that, even though the internet seems to abound with negativity about autistics, actual autistics are a far cry from what Google Autofill's pessimistic mind seems to suggest.

So, without further ado:

Autistic people are unique: We come in all different shapes and sizes but we're all connected through the mysteries of autism.  We are a community but we are individuals first and foremost.  We deserve respect just like any other person.

Autistic people are smart: Booksmarts may be a stereotype, but regardless of how we do in school or how we are perceived by the world, all autistics have their strengths and talents.  We are each brilliant in our own ways.

Autistic people should be able to express their autism: Everyone's autism "shows" in a different way - some of us flap, some of us hum, some of us count, some of us rock, some of us shake, etc. - but we all deserve the right to show our autism to the world without shame or discouragement and without being set aside as an outcast.

Autistic people should be able to communicate about autism: Sometimes, people forget that the real experts on autism are autistics.  Every autistic has value to our community and every autistic should be able to embrace and love their autism.  Every autistic should be allowed to teach others about autism.

Autistic people should exist: Simple, obviously, but some people might need a reminder that autistics aren't a burden on society.  In fact, autistics are a great addition to our world!  Autistics bring new thoughts and new ideas to share with the world.  There are many well-known autistics who affect us positively every day, and many more ordinary autistics who bring joy and wonder to those around us.  We all participate.  We all are loved.  We all are needed.  We are not a bad thing.

Autistic people do exist: Also simple, but every once in a while, I hear something ableist that makes me want to shout that autistic people are around and we hear and feel and understand what is being said about us, and sometimes it makes us angry and upset.  Autistics are here - whether you know us personally or not - and we don't like being disrespected.  Nobody likes being disrespected.

Autistic people are human: "People" and "human" are synonymous, so that's sort of redundant, but it felt important to add.  Because, even though some of us have differently wired brains, we're all made of chromosomes at the end of the day, and is the thing that connects us all.

Spread the Word to End The Word

"It deeply saddens me when I hear anyone use a derogatory label for another human being."

   - TJ McCue

I'm sure you've heard this story.  Mr. McCue is a journalist with Forbes who covered John Franklin Stephens' open letter to Ann Coulter regarding her inappropriate and downright disrespectful usage of the R word last October.  

If you haven't heard the story, it's a great one about self-advocacy and it really makes me look up to Mr. Stephens, who is such a champion for not only himself and his own rights but also the rights of so many other people.  I'm really inspired by him.  His full letter can be read here: http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

What inspired this post was a debate I had recently with someone regarding the R word.  It's sometimes difficult for me to convey my thoughts exactly, even though I usually have strong opinions.  I just don't always have the linguistic precision to explain myself.  My stance was that the R word is hurtful and should never be used, ever, with no exceptions.  The other person argued that it is merely a word and we have attached connotation to it ourselves.  He said that he wasn't offended by it, so there was no reason he shouldn't use it.  That upset me greatly, but I wasn't able to tell him why.  

Honestly, I'm still not sure how to phrase this.  I just know that, in my opinion, the R word is disrespectful and should have no place in conversation.  

I am autistic.  Sometimes -- in fact, more often than not -- I struggle to understand the people around me and where they are coming from in terms of their own thoughts and opinions.  I like to learn as much as I can about things before I take a stance on issues.  I might not be the most empathetic person nor am I the world's greatest expert in understanding others, but I do know that it is not all right to hurt people.  I mean, seriously: that's not a difficult concept! 

I'm honestly surprised more people aren't upset when this word is used so callously.  Even if it doesn't hurt you, I can guarantee it hurts someone, and making excuses for your language is only taking steps back from the real issue.  

It is hard enough to get respect in this world, and with words like that flying around, it's even more difficult.  

I'm disappointed that this word exists.  I only imagine it's caused much more harm than good.  

Autistic Females

“Females with ASDs often develop ‘coping mechanisms’ that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations. Sounds easy enough, but in fact these strategies take a lot of work and can more often than not lead to exhaustion, withdrawal, anxiety, selective mutism, and depression.”

—	Dr. Shana Nichols

Honestly, every time someone with a PhD tells me something about autism, I cringe a little bit.  It's a reflex.  It's not to say that there are no experts in the field of autism.  It's just that, as an autistic person, it's sometimes hard to believe that there is anyone in the world who can understand my brain better than I can.  I know from experience that every autistic brain is unique, and I'm certain that I would not be an expert in anyone else's brain but my own.  So sometimes, it takes me aback when people - despite high education - make generalized statements like this about autistics.  Because it's so important that we remember that all autistics are unique.   

However, I'll admit, this quotation describes me perfectly.  I have done - and continue to do - every one of the activities Dr. Nichols mentions.  I mimic, I watch, I camouflage.  I study, I practice, I learn.  It is a constant struggle, it requires constant analysis, and it means that my brain is always "on."  For years, I was exhausted from analyzing everything and trying to make sense of the world.  I was anxious any time I had to be around people, because it became a job to try to understand them.  When I am very frustrated, I communicate only in sign language or by writing.  I have experienced depression for years.  

Brutal Honesty & Asperger's Syndrome

This is a quotation from a speaker callled Penelope Trunk.  I do not know Ms Trunk, but I really like this quotation, and after having done some research, I've learned that she is on the autism spectrum herself, with a diagnosis of Asperger's Syndrome.  Asperger's, by the way, is also my official diagnosis, though I often find myself lumped together with people all over the spectrum and I, myself, generally identify as "autistic" instead of specifying.  Regardless, this is a quotation that is so relevant for me.  This is a quotation that I wish I could show each and every person I interact with.  This is a quotation that makes me genuinely happy.
I was working on a job application today with my best friend.  I told her that the application wanted me to list some of my skills and I was having difficulty compiling a list.  She offered me "brutally honest."  At first, I didn't know what to make of this.  I asked if she was being facetious.  But no: she assured me that tend to be "brutally honest."  I guess that's true.  And honestly, I probably offend people.  I probably do, but the thing is: I don't intend to.  I didn't even notice I was "brutally honest" until it was pointed out to me, twenty years into my life.  Please enjoy this quotation from Penelope Trunk.  If you are on the ASD spectrum, perhaps you will see some of yourself in it.  And if someone you love is on the spectrum, perhaps it will help you to understand them better.

Penelope Trunk states:

“Assume the person with Asperger's is not intending to offend you. Intention to offend is actually a complicated line of reasoning that someone with Asperger's doesn’t have…People with Asperger's want to be nice. It’s very important to them even though you would never guess that by their actions. So if you tell the person what you want, and give specific direction, they will always try their best to do it, because they want to be nice. That said, them trying their best might look to you like not trying at all…Just because someone with Asperger's says no right now doesn’t mean it’s no later. No is a defense mechanism for “I don’t like change.” You can try asking again a second time later.”


I like that.

I Am

People-first language is a controversial topic.  And perhaps this will be an unpopular opinion, but I honestly don't know why it is such a big issue.
I am autistic.  I have autism.  I have Asperger's Syndrome.  I'm an ASD kid.  I have used all of these to describe myself.
Technically, I am a "person with autism" or "person with Asperger's Syndrome" or "person with ASD," but of course I am a person -- what else would I be?!?  I'm obviously a person!  My opinion, unpopular or not, is that neurotypical people don't (necessarily) introduce themselves as "Hi, my name is ______ and I'm a person" so why should autistic people feel the need to qualify their autism with their inherent personhood?
That's just what I feel.  Because living with autism has been a constant challenge in my life and I'm only getting to a point now where I am really able to see and understand my limitations.  But despite all the negatives that come with autism -- and yes, some days, there are a lot -- ASD is part of who I am.  ASD is not wholly who I am, but it is as much a part of me as my brown hair or my blue eyes.  I have not always felt as positively about my ASD as I do now, but at this point, I do believe it is a defining part of my character and I want to own it when I describe myself.
I am autistic.
There are other people who view person-first language differently.  I know other people who introduce themselves as being "a person with autism."  And that's fine.  That's great!  I think that we as humans are in charge of creating ourselves and coming up with comfortable labels is all a part of that process.  I choose to refer to myself as autistic, but others may not choose to refer to themselves that way.  Basically, I think advocates sometimes get so caught up in thinking their way is right that it's really difficult to see things from the other side's perspective.  I don't think we should have only people-first language but I also don't think it should be obliterated.  I think every person should refer to himself or herself as he or she wishes to be referred, and then I think it's our job to respect that choice.
It's taken me 20 years to understand person-first language and the conflicts surrounding it, but that's where I stand right now.
I am autistic.  And I will refer to you as you wish to be referred to.