Telling Autism to Suck It-- 10 Thoughts
In response to this:
1. I am breaking my own rule by writing critically about something that someone has posted on her own personal blog, and I want to explain why I have that rule and why I am breaking it.
I think having autism or an autistic child is very hard. Too hard to be polite and careful with your words all the time. Sometimes you get to be rude. Sometimes you get to be insensitive. Sometimes, you get to be just plain angry in ways that other people will read as hurtful.
And you do not deserve to be attacked for those things. I do those things, because I could not get all of things I need to say to you out if I did not. And I would not deserve to make space for myself to act like that if I denied others the same.
Things change, though, when someone chooses to feature your words. If an autistic blogger writes something really venomous and hurtful about parents, and I publish it here, I think it is fair to criticize me, but not her. She would be expressing herself, through autism, in the ways that she needed to. I would be holding up a too-angry, necessary-but-flawed communication as something to be admired and imitated.
And the same holds true with the words of our own that we choose to feature. When I repost something or put it on a list like this, it's fair to criticize me if it is something that is too angry or not respectful enough of others. It's not the writing that would be the problem -- it would be the choice to make it representative of myself or, worse yet, of the autistic community.
Jo Ashline published the piece linked to above at the Orange County Register's Mom Blog. I found it so offensive that I called to complain, and it was immediately taken down-- apparently because this slang use of the word "suck" violates the Register's editorial standards, not because of offensive content. I believe this, because Ashline has written very offensively about autism before. Had this not been published there, as a representation of the autism community to the public at large, I would consider it fair venting from an exhausted mom. But, even though it is no longer on the Register's site, I think it is "fair game" because it was published there, the OC Mom's Facebook page still links to it on Ashline's site, and Ashline doubled down on the offensive aspects of the piece in another post at the Register.
2. We had a very good conversation about this piece on the thAutcast Facebook page today, and I strongly suggest that you check it out. I'd like to share what teenager Jeremy Venhuizen said:
"My Asperger's IS me, and sometimes it's a challenge in the world around me but, it's not like I'm dying from it."
3. The original achievement that Ashline is writing about is an impressive one and I congratulate both her and her son:
To you, a piece of paper with a random name on it. To me, the very first word I’ve ever heard my almost 10-year-old son read. DO YOU HEAR THAT AUTISM? I’m going to teach my son to read, so SUCK IT.”
I'm glad that he is learning to read words. I can't help but see this as series of loving gestures-- her teaching, his response, her celebration. I think it's all motivated by love.
4. I think the correction that an autistic person sent to Ashline was probably also sent out of love:
“Did you just tell autism to SUCK it?”
I informed her that yes, in fact, I had and that I had meant every word of it. She proceeded to tell me how terrible and hurtful and insensitive I was being, that she had autism and that my statement was an insult to her and everyone on the spectrum and that I really needed to rephrase my sentence.
5. Many of the statements that Ashline makes are simply factually inaccurate. Things like this:
We often disagree on the causes of and treatments for autism, and much like our children, no two families dealing with the ramifications of this disorder are truly alike. But what I think most of us CAN relate to is a feeling that even though we “accept” our child’s diagnosis, we spend our days and nights dedicated to trying to GET RID OF IT because – now bear with me for a moment here – autism, the kind that sneaks up on our kids and steals their voices and stifles their creativity and assaults their tender and sensitive sensory systems and holds their bodies and minds and emotions hostage, SUCKS.
There are actually many parents, even those of children with extreme challenges, who fully embrace their child's autism and do not appear to be seeking to get rid of it. I think these parents want everything that Ashline wants for her son Andrew in terms of functioning, but they believe that they will get it by being fully functioning autistic people. They do not want to get rid of autism. They do not see it as something to be fought.
6. One of the reason's I still have trouble with Alison Singer, formerly of Autism Speaks and now with the Autism Science Foundation, even after she has changed the way she talks about autistic people, is that one still hears echoes of her earlier, less politic words in what others are writing today.
Several years ago, Singer wrote this in "Cure Is Not a Four-Letter Word":
When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum. I have not met a person with Asperger Syndrome who seemed anything like my daughter. None of these persons, however, has ever met my daughter because it is so hard to take her out of the house. It is hard to consider her “differently abled” because she is not “abled”. She is sweet and loving and works harder than anyone I know, but she does not have any areas of strengths that I fear squashing through medication, intervention or cure. Without her medication, she cries almost constantly during the day and can’t sleep at night. She has frequent seizures. She cannot tell me when she is in pain, or where it hurts. She puts everything in her mouth unless it is food. At age 9, her favorite game is still “this little piggy”. Thankfully, recently she has learned to use words to name items she wants and needs, and this has dramatically reduced her violent tantrums. She has benefited greatly from behavioral therapy and from risperdal and depakote but she has a long long way to go. She has a neurological disorder that responds to antipsychotic medication. Her pain is heartbreaking and I pray every day for a cure. I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life.
Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back. Autism Speaks’ constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure.
This is Ashline today:
This is NOT THE SAME as saying that people with autism suck. My son has autism. My son most definitely does not suck. In fact, he’s amazing, funny, loving, beautiful, inspiring. But he’s also being held hostage by a disorder that comes in many shapes and sizes, a disorder that in our house, is not a welcome guest but rather a selfish and thoughtless intruder. The fact that I do not embrace autism as something to be romanticized or adored does not mean I do not love the bejezus out of my son. I also realize that autism is a part of who he is, has shaped a portion of the person he has become and continues to be. But if someone handed me a guaranteed cure tomorrow, I wouldn’t hesitate one nanosecond before shoving it down his throat. I would risk losing a portion of the little boy I love so fiercely and unequivocally if it meant that he would have a chance at navigating this life without the bondage of autism.
Because that’s my job as his mom; to put his needs before my own and what he NEEDS is someone who sees his autism for what it is: a thief of dreams and potential, a ruthless foe that does not deserve a peace treaty.
I do not know if Ashline uses dangerous treatments such as chelation with her son. I do think someone who is risking her child's life in a futile effort to "cure" him would find comfort and inspiration in her words. If you are willing to destroy a part of your child to cure his autism, I do not think he is entirely safe with you. You love part of him, but hate another part of him. He will feel that. That will hurt him. The attitude that your child is a catastrophe may be holding him back as much as the autism is.
And organizations like Autism Speaks are still hurting kids by teaching their parents that autism is only the bad stuff.
8. Ashline deeply misunderstands the self-advocate community:
There is an entire community of folks on the spectrum who denounce those of us who seek funding for research and attempt to implement the newest medical and behavioral interventions in an effort to help our children. They criticize our efforts and accuse us of ableism and twist the love and hope and promise we hold for our children into something ugly and misleading. They wonder why we won’t just embrace our babies for who they are and celebrate the uniqueness that comes with their autism.They make our plight to salvage what is left of our children’s future look as if we are questioning the worth of everyone with an autism diagnosis and they point fingers and sling insults without having walked a day in our shoes.
Again, this sounds very much like someone who wants to use dangerous treatments like chelation or chemical castration. Because it is the use of dangerous and ineffective treatments that the self-advocacy community objects to. Even when people criticize generally effective practices like ABA, it is because they have serious limitations and do both harm and good. And there are self-advocates like Melody Latimer of AS Parenting who know what it is like to parent a child whose autism causes intense challenges. The assumption that everyone with Ashline's experience would be as embittered and hateful as she appears to be is simply, factually wrong.
9. I think Ashline's use of a picture of her own son in order to try to show how awful her life is and engage the reader's pity is cruel and disrespectful. It makes me concerned about abuse.
10. Again, Ashline has doubled down, promising that she will continue to be just as offensive in the future. And, again, that would be fine if she confined herself to her personal blog. But it is not appropriate for a general interest site like the Orange County Register. There needs to be a change.
Although I was promised I would hear back from the Register when I called yesterday, I have not. I am asking you to call or email editor Ken Brusic and ask him to look seriously at what Ashline has been publishing. firstname.lastname@example.org or (714) 796-2226.