I had to unfollow/unfriend lots of autism self-advocates on social media because of the hate they spread. I make no apologies for that. Tolerance goes both ways.
And by autism advocates I mean autistic self-advocates who cannot separate the good parents from the bad.
These autistic advocates have taken to vilifying all parents of autistics unjustly.
Then again many autistics have experienced bullying and abuse at the hands of non-autistics and have grown to hate them as a result.
These advocates ask for compassion and often give none in return. I prefer to love people and to spread love.
I have seen many self-advocates take this stance: if you don’t agree you are a terrible bigoted person and you should be quiet.
One of the biggest issues is that of the Kelli Stapleton case.
The negativity that come from some autistic self-advocacy groups is troublesome. I am an autistic self-advocate but I don’t fall in to this victim mentality that some have fallen into. I have never met a parent who is perfect and I know for a fact that most parents are trying to do what is best for their kids. That being said I also understand where most of autistic self-advocates are coming from. Many of them have been abused, beaten, bullied, and victimized by non-autistic people which has led them to be angry and possibly have PTSD. They are so angry that when they see things like this it brings back many of the experiences that were negative and painful and they assume this defensive position that talking about why Kelli Stapleton tried to kill her autistic daughter Issy is the same thing as condoning it. Its not. Trying to understand something like this is done simply to prevent it. Parents often get little to no assistance. These autistic self-advocates often don’t realize the adverse affects their behaviors can have on their families and loved ones because of their mindblindness. If i was in Kelli Stapleton’s position I cannot say I would have done the same thing, but I can say I understand why she did it.
When are autistic self-advocates going to stop blaming parents for everything? Just because they had bad experiences in life doesn’t mean every parent of an autistic child is terrible.
Parents of autistics are our natural allies and not our enemies. As long as we are at each others throats we will gain nothing. A house divided is a house that will fall.
As my friend Rochelle Dolim said:
“…they can’t educate against ignorance and hate by using anger and hate and expect any outcome other than perpetuating those negative feelings. Not much longer than a generation ago, minds that are now identified as being on the spectrum were an integral part of getting man safely to the moon and back. Only the perspective of autism has changed.”
I was raised with the idea that having a disability was not something to be ashamed of. I watched as my mom worked tirelessly to get my a diagnosis and taking me to the doctor on a regular basis after I got it. I watched as she advocated for me struggling against a system that wanted to deny me services and that I was even autistic. I watched as she took my case to against the Regional Center in California to court. The case set a precedent in California and and was one of the first times that Aspergers was legally recognized as autism because that was the issue of the case we filed in 1997. That’s who my mom is and that is who most parents of autistic children are. They are people who will fight to the ends of the Earth for their children. And as their children get older they will fight alongside them.
16 thoughts on “My rift with some autistic self-advocates”
Wow. Thank you so much for being so honest and I’m so sorry if you have lost friends over these battles ❤
And I have gained new ones Jill.
Robert, you have written such a poignant piece here and I’m humbled by your honestly. Your spreading love is something I’m absolutely onboard with. I’m so happy you’re MY friend, and so proud to say I know you!
Robert- I almost cried when I read this. Thank you for talking about a topic that is so painful for parents and advocates and acknowledging your Mom’s hard work. It’s hard today to find self-advocate role models for my son, you are one of the first! Thank you for being reasonable, understanding and compassionate. Don’t stop speaking up, we all need you. I’m sorry this is hard for you but I’m hopeful one day we can all work together to make it better for everyone.
I have the unique prospective on this. I am an Aspie as well, and I have a child on the spectrum. I belong to several “self advocacy” sites, and often have to walk away when people start complaining about autistic parents. Especially when it comes to vaccines, trying alternative therapies, or ABA therapy. In our case, autism is an auto-immune disorder. Both my son and I have damaged immune systems and have severe reactions to immunizations. I can’t deny that vaccines did not play a role in the severity of my son’s autism. I have tried alternative diets, only because I get stomach aches and severe uncontrollable diarrhea eating gluten and dairy. ABA therapy is one of the only successful therapy that my son used…
I love this and I love you. Thank you so much.
You can think what you want, Robert, but labeling us “mindblinded” and “black-and-white” thinkers and saying that we are incapable of differentiating between good parents and bad parents, is horribly ableist. There are many parents who are amazing to the autistic community. I can bring you an endless list starting with Arianne Zurcher, Brenda, Beth Ryan, Heather Ure, Karla Fisher, Tashia, Jess (Diary of a Mom), Leah Kelley, and many more. I thank each one of these parents every time they demonstrate respect for their children’s privacy and push for acceptance. In am sure that each of these parents have had struggles trying to find the right treatments for their children. But you know what, these parents actually ADMIT to their mistakes, make amendments, and do not go around justifying abuse and murder of autistic people.
However, there are a few vocal parents who are unapologetically hostile to autistic adults because they cannot handle our brutal honesty, since many of us are not parents. But they don’t even take into account that pro-neurodiversity autistic parents do exist! Fortunately, these parents are actually in the minority, but because they are so loud-spoken and hateful, it is hard to ignore them.
By the way, it looks like someone has been eating Michelle Garcia Loser’s “Social Thinking” like candy, since he has also posted a little gem on how we all need to act more like neurotypicals.
Actually. I don’t think we do need to act like neurotypicals see my response to your comment on my blog post Passing For Neurotypical https://blog.robertmoran.org/2014/07/04/passing-for-neurotypical/#comment-236
we know #notallparents, but kelli pleaded guilty to child abuse, so that doesn’t apply here. regardless of the child’s neurology, parents can be good parents, bad but not abusive parents, or abusive parents (who are, by definition, bad parents).
parenting Autistics is hard, because PARENTING is hard. anyone making a genuine attempt to raise their offspring to be well adjusted adults has my admiration & respect. this goes for NT parents of Autistic offspring as much as it does for any other challenge.
now for some of that “tolerance goes both ways”…
…every time a child like we used to be is murdered, the same justification is used. how can these “good” parents, who “love” their children, who do everything they can to “help” their children, not be horrified by these stories? how could they care more about the murderer than the victim? how could they hold their beloved child to ransom for “better services”?
yes, there are conversations to be had about preventing further tragedy, but none of them involve a “poor little kelli” narrative. we could be talking about media distortions of Autistic lives (knowing Autistic adults exist and having adult role models might give everyone more hope). we could talk about preventing child abuse, but with emphasis on spotting the signs in neurodiverse children. we could discuss and do so many things, if only more of our “natural allies” were willing to do it.
Any conversation about that would also have to include the emotional and physical and mental toll raising an autistic child can take on a parent or caregivers because as you said raising an autistic child is hard.
no, it wouldn’t. at least, it wouldn’t unless you would include that in every conversation about anyone with caring responsibilities trying to kill their dependants. if I was responsible for looking after my (spoilt, very NT) cousin and I snapped & hit her, no one would have any sympathy for me, and rightly so.
I repeat, PARENTING is hard. parenting Autistics comes with extra challenges, yes, but so does many other parenting types (parenting other disabled/sick children, parenting *while* sick or disabled, parenting while also looking after adult dependants, single parenting, parenting while dealing with racism, pink families…) and I’m sure you wouldn’t see all of those as murder justification.
so, what is it that makes me smacking my cousin round the side of the head socially unforgivable, but planning and attempting to carry out the murder of an Autistic child acceptable? both perpetrators might claim similar motives (frustration), but mine was an unplanned impulse with minimal medical consequences. the only explanation I can see is that Autistics are considered sub human. Kelli’s allies will never be mine because I want to live in a world where I am seen as a real human.
You could never be a “natural ally” simply by parenting an autistic child. Alliship is something you have to work for by actively listening to and supporting the things autistic adults have to say, even if they do not agree. They need to acknowlege that they as NTs need insight from autistic people, and not assume that we are “not like their child.”
Yelling rude, snarky comments with pride and taking everything personally as an attack on their parenting ability, and dismissing self-advocates as being too “high-functioning to speak for their kid” is the exact opposite of alliship. It is just another form of bullying. Kelli Stapleton’s buddies did exactly that and never apologized for it. I will never forgive them for it, nor will I ever forgive Kelli in a million years.
Nope, #notallparents are like that. In fact, relatively few parents are like that towards autistic people. #NotallNts are like that. But every single autistic person in the world has had to take ableist shit from neurotypicals at some point in their lives. Quite often it would be from their own family, but sometimes it would be their teachers or kids on the playground. And most definitely from the media!! #YesAllAutistics
Well you never have to worry about me responding to you in a manner you don’t like. I am one that firmly believes in civil discussions about controversial issues.
we agree with each other. I’m sorry for the confusion. I was trying to meet anyone who might agree with this post somewhere they might understand and, in modifying my tone too much obscured my position.
I took the term “natural allies” directly from the post (I meant something like “yes, we should be on the same side. why are so many parents choosing to be the enemy? we could do so much together”). I know of so many good parents (who teach self advocacy to their offspring, respect Autistic boundaries, fight alongside Autistic adults to make the world better for their kids) and have come across many “good” parents (who do none of these things, but identify as “good parents” anyway, and attack anyone who tries to stop them hurting their kids because they’re a threat to that self image).
I hope this clarifies my first post, and sorry again for possibly hurting you at this difficult time.
This was actually directed towards Robert, sorry if that was not clear. He used the term “natural ally” in his post.
With all due respect, I must make one point here that is sadly either at best inadvertently overlooked, or at worst, explicitly disputed by far too many people:
Those of us who have been psychologically abused have a right to hate our abusers, even if those abusers are members of our own families. We owe absolutely no respect to the “authority” of an abuser. They showed SUB-zero respect for our HUMANITY, so why would they deserve any authority, let-alone any RESPECT for it? If they wanted us to treat them as authority-figures, they should have treated us like human-beings. And before you trot out the old, stale “Forgive them” platitude, I’m going to level with you. My attitude about forgiveness is the one that’s commonplace in Japanese culture. Forgiveness must be earned. If someone betrays your trust, you don’t trust them again until they EARN that trust back. Forgiveness is no different. And if you think it is different, I would say, “Maybe it’s time to re-think that?” Unearned forgiveness is a recipe for Stockholm syndrome, and I am not willing to step into that cave. I don’t have patience for abuse-apologists because I have first-hand experience as an abuse-victim, and I could never forgive myself for condoning another person being subjected to the ordeal that I endured.
If I see a parent, be they autistic OR neurotypical, doing something that is distressing to their autistic child, I will inform them that their actions are causing harm. The proper response to that is NOT to argue that the action was taken with good intentions, it’s to be grateful for the heads-up that they were unwittingly doing something that would hurt their child. A harmful act done with good intentions is STILL a harmful act. Intentions don’t magically guarantee the results against backfiring, and when they DO backfire, it is morally IMPERATIVE to ADMIT that they did.
A friend gave me some wise advice: NEVER trust an adult who won’t apologize to a child.
If a parent’s well-intentioned actions caused unintentional harm, that parent is morally OBLIGATED to APOLOGIZE to the child and to PROMISE to avoid making the same mistake twice because once the parent learns that their well-intentioned actions caused harm? They then KNOW BETTER THAN TO REPEAT THE ACTION. My abuser, thankfully, was NOT a parent, but rather a teacher in middle-school. She apologized to my parents when informed of how much harm she had done, but she NEVER apologized to me, which made it clear to me that her apology was NOT sincere.
If I am skeptical of an apologizer’s sincerity to me, I offer forgiveness of equal sincerity to the apology. This way, the only way the person can legitimately claim to be offended is, ipso-facto, to confess that their apology was false all-along.