My Love Hate Relationship with the Neuro-diversity Movement

The neuro-diversity movement (NDM) probably wouldn’t refer to me as one of their friends.  Nevertheless, there are several things that I appreciate and respect about them.  I often read their blogs. The posts I get the most out of are written by people with autism that describe their sensory experiences.   Many of us wish we could just get into our children’s heads and experience what it feels like to be them, but that isn’t an option.   Reading the experiences of other people with autism offers some insight.  Everyone is different, so I can never be sure, but often there is an explanation that really rings true and helps me understand Naomi better.  I also appreciate the posts that describe how to work with people with autism in a way that is most effective and respectful.  I try to apply what I learn from those too.  It is far more helpful than people telling me that Naomi is being belligerent, manipulative or “just like that.”  I think a number of the therapies we use have been modified as a result of advocacy for greater sensitivity and dignity when it comes to working with autistic people.  I appreciate that!

On the whole, I think the NDM deserves a lot of credit for increasing autism acceptance in our society.  “Acceptance,” can be defined differently depending on who you ask, but for me, it means being open, welcoming  and accommodating to children and adults in all areas of our community – Our schools, our recreational facilities, our stores, our churches and our neighborhoods, to name a few.   It also means that when we make policy or laws, we make them with people with autism in mind.   We have got a long way to go with acceptance, but we have also come a long way and I think the work of the NDM continues to have a large impact.

The trouble I have with the NDM is the vilification of anyone who expresses a wish for a cure or prevention of autism. I’ve heard this phrase over and over. “You can’t love your child and not love his/her autism.”  Actually, you can.  I don’t just say this with regard to myself but with regard to thousands of parents that intensely love their children, and would do just about anything to find a cure for autism.  They watch helplessly as their children find their bodies cause them to behave in ways they can’t control.   They are told that they shouldn’t want a cure for their children.   They should love them just as they are, as if they don’t love them already. 

Autistic adults that want a cure, (yes there are some), are told that they hate themselves or that they have been brainwashed by a society that does not value them.  They are most certainly not welcome participants in the NDM and I've seen this extend into character attacks that the NMD would not tolerate if these attacks were aimed at one of their own. The ironic thing is that a movement that believes in nuerodiversity does not allow for a diversity of opinion.  You either agree with us, or you are anti-diversity. Hmmm.

The NDM tends to see autism not as a serious biological disorder, but only problematic due to the discrimination and prejudice which holds people with autism back.  While acceptance and accommodation are helpful, there are many people for whom that is not enough to lead a fulfilling life.  Autism profoundly affects the sensory and nervous systems which cause a whole host of symptoms including meltdowns and self-injurious behavior.  This can cause people with autism to act out in ways that is not a true reflection of who they are.  Even when they get lots of acceptance and lots of therapy, many are left unable to communicate effectively, form relationships, self- advocate or live independently. For them, this is not a civil rights issue. This is a medical issue.

On the bio-medical topic, you would swear, from reading neuro-diversity blogs, people that want to take a bio-medical approach to autism are STAMPEDEING toward chelation, bleach enemas and fetal transfers.  These treatments are extremely rare and  almost never used without the guidance of a trained medical doctor.  Bio-medical treatments are mainly just about diet and vitamins.  Most parents who look for these treatments are not hell-bent on completely eradicating autism.  They just want their children to be healthy so autism is not a barrier to making their way in life.

The NDM tends to be really hard on parents.   A parent that publicly admits to being crushed after his/her child has been diagnosed with autism, or jealous of families with neurotypical children,  is viciously attacked and told he/she is a bad parent.  It seems that there are parents that are afraid to say that autism has had a negative impact on the family, for fear of being accused of not loving their child.  They end up saying things like “It’s not the autism.  It’s the sleep deprivation, the anxiety and the meltdowns.”  Well , those things go hand in hand with autism.  It’s good to know they are not bothered by stimming, lack of eye contact and language delays, but that’s not all there is to it!

When an autistic person displays violent or aggressive behavior, it seems that people from the NDM respond by saying that someone in the environment –usually the parents- must have been doing something wrong.  In every other context in the world this is called ‘blaming the victim,’ or ‘justifying violence’.  Parents that have been injured by their children are berated for discussing it openly.  They are told doing so disrespects the dignity of the person with autism.  No other options?  Suck it up.  It’s your fault for failing to control the triggers.  The fact that, in many cases, triggers can be extraordinarily difficult to figure out and even more difficult to constantly control seems to be irrelevant.  There is almost never an expression of concern for a parent who was admitted to the emergency room or lives in fear for their safety.   Just take the blows, take the blame and don’t you dare say anything negative about autism!  I don’t mean to indicate that parents should not learn to effectively and respectfully work with their kids nor should the autistic person be shamed in such a circumstance. Often the violent behavior is self-inflicted and I can’t imagine how anguishing that can be.  At the same time, it is reasonable to acknowledge that a condition that makes a person act out this way is something much more serious than simply a different way of being.

When asked about seizures, anxiety, mood swings and OCD the NDM point out that nuerotypical people have these conditions too.   This is true, but they are exponentially more common and unquestionably linked to autism.  It’s like diabetes link to kidney problems, neuropathy and impaired vision.  People without diabetes have these health conditions too, but if you don’t have diabetes, you’ve got a much better chance of avoiding them.  

Sometimes the NDM  acknowledges that people with autism need therapy or need to be taught things that come easily to neurotypical people. In my experience, however,  they do not acknowledge that often therapy is ineffective, or parents have spent countless amounts of time, money and energy trying to teach a skill that is not being learned.   The only answer is that the parent hasn’t done enough, had the wrong attitude or chosen the wrong treatment.  I believe that we, as parents have to keep working and never give up, but  can’t we acknowledge that  a neurological condition that prevents people from acquiring basic skills is not as natural a variation as hair color or shoe size?  I want to point out here that both Temple Grandin and John Elder Robison have acknowledged that severely autistic traits are cause for serious concern.  I appreciate that!

Finally, the advice for parents to help their children with autism, can be taken to the extreme.  Here is one example.  “You DO NOT EVER restrain an autistic person who is having a meltdown, ever! “  Never?  I have seen an autistic child run toward a baby in the middle of a meltdown.  Was the mother just  supposed to stand back and let him work it out while hoping that the baby’s brain doesn’t hemorrhage?  I know a woman who had her hair ripped out in the middle of her child’s meltdown.  Was she supposed to figure that she could always wear a wig and wait for her hair to grow back?  I can understand that if at all possible, restraining an autistic person in the middle of a meltdown should be avoided, but never ever?

Here is another example from a blog post on stimming.

“Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you…”

Now, I appreciate the idea that basic, harmless, stimming behaviors shouldn’t be suppressed, but there are appropriate and inappropriate stims.  My daughter likes to stim on zippers.  I have bought her many zipper style bracelets and even encourage her to stim on them, but sometimes she stims on other peoples pants, including men that are complete strangers.  Damn right I grab her hands!  If I am a bad mother for grabbing her hands, then what kind of mother would I be if I let her stim on some man’s fly?  The overall principle expressed by the NDM is not wrong.  Let just not take it to extremes!

There.  Now I’ve pissed of the anti-vaccine movement and I’ve pissed off the neuro-diversity movement.  Of course, I’ve outlined the things that I admire about them too, but let’s face it.  That’s not what anyone’s going to focus on.   I guess that’s why this blog is anonymous.