Friday, August 22, 2014

Why the cure analogies are invalid

Most of the time, when someone expresses a desire for a "cure" to the autism community, one of the neuro-diversity (ND) folks says, "If you want to cure your child with autism, you are no better than the religious extremist parents who try to pray away their child's homosexuality."  I have a few problems with this.

First off, a homosexual can have a rewarding and fulfilling life whether or not they are "cured".  Let's not get into salvation here, folks, I am talking about their life here on earth.  They can hold down the job of their choice, live independently, and do almost anything they wish -- except get married in some states, but that seems to be changing as well. 

Many autistics (especially those that are leaders in the ND movement like Ari, JER, Temple, etc.) also live fulfilling lives.  Wonderful.  Do I think they should be forced to take a "cure"?  Hell, no.

But what about the autistics on the other end of the spectrum?  What about the non-verbal folks or the ones with debilitating co-morbids?  Can they live rewarding and fulfilling lives?  Many of those folks will need long term care and cannot ever hope to live independently.  Is this a full life?  Not so much.

Secondly, the religious extremist is in conflict with the homosexual child.  One wants the condition while the other does not.  In the case of my older, verbal son, we are both opposed to the autism.  He has told me repeatedly that he wishes he didn't have autism.  So we are NOT in conflict.  While I have no idea what the younger son would say about this (as he is non-verbal) he is the one that will have the most limitations on his life. 

So if I do not consider a cure, aren't I dooming him to an institution some time in the future? 

Isn't that almost child abuse?  It certainly seems neglectful to not even consider the possibility of a cure.

The other analogy that is usually thrown out is that it is like you are saying you want a totally different child -- a non-autistic one.

OK, I get this one, but it isn't accurate.  If a parent were to say "I would do anything to get rid of my son/daughter's autism" then I would be right there with the ND folks to condemn them.

But I have NEVER said that I would do "anything" to cure my child(ren).  I refuse to put either of them through anything that I feel would harm him.  If a cure is never found, I will continue to raise and love these two quirky young men I have been given.  Their autism is only one aspect of their personality.

Would they have the same personality without their autism?  I actually think they would.  It has been formed.  But I do want to know what my 16 year old is thinking when he giggles for no apparent reason.  Do I care if he toe walks or flaps or makes eye contact or whatever?  Not so much.  But I would like someone to find a cure for the unnecessary violence and communication problems.  In my opinion those are not co-morbids they are the autism.

So yes, I am still hoping for a cure.


  1. Yes, I love Zeke and William very much but if I could make life easier for them, I certainly would. That is the heart of any parent I hope. Love reading about your ideas and thoughts! Blessings!

  2. I think you mischaracterized the comparison.

    The religious extremist parent who truly wants her son ‘cured’ from being gay is the one with the issue about homosexuality. Just like the parent of a deaf kid wants her girl ‘cured’ of deafness.

    What the parent sees as their kid’s greatest tragedy (gayness, deafness), the kid more than likely sees as his/her identity.

    You’ve got a verbal kid on the spectrum, who has expressed a preference to not be autistic (or for a way to better manage the side effects of his autism that he finds debilitating). You’re right, there’s no conflict.

    However, there are a ton of adults on spectrum who insist they were very much like your boys as kids… and who came into their own as they got older. So it’s probably worth taking the views of the folks who’ve ‘been there’ (as kids on the spectrum) in a way that you haven’t (as you’re not on the spectrum).

    This ‘divide’ reminds me a lot of the gap in understanding/empathy between potential adoptive parents / adoptive parents of kids who are still little and those of adult adoptees. The adoptive parents tend to write the adult adoptees off as ‘angry’, that their (still little) adopted kids will never, ever grow up to be like that.

  3. Caylee, I do NOT dismiss adult autistics views in the slightest. While I am not autistic I do understand their identifying with that aspect. But isn't it more like a transgender issue? Most people accept and identify with their birth gender. But it isn't fair when the vocal majority act like the other point of view isn't valid. If Joe were to tell me he is happy being autistic, I would be fine with that. If Alan (my non-verbal child) were to come up with a way to tell me he is happy as he is, then I would be ecstatic.

    My point is that it is mostly those people with milder autistic co-morbids (flapping, poor eye contact, social skills impairment) that do not want a cure. There ARE adult autistics out there that still wish there was a cure. I suspect they are the ones with the more debilitating co-morbids.

    I just wish the vocal majority (those that do not wish for a cure) would acknowledge that not everyone is the same. I don't think anyone should be forced to be "cured" (as if that is even possible) but I resent when people tell me that wanting more for my child than probable institutionalization is not accepting of him.

    I can't just accept that my beautiful child is destined to never be able to live on his own or communicate meaningfully with me.

  4. If there was a cure for all the suffering, anxiety, ocd, anger, aggression, and violence that Bethany goes through I would give it to her in a heartbeat. She does not enjoy being miserable like that. No one does. If Bethany could, I know she would tell me she'd like to be cured- at least from these symptoms.

  5. Well said. I believe everyone wants to be able to live independently, make a living wage and form deep relationships. If they can do that with autism, I haven't the slightest problem with autistic people remaining autistic. For many, autism puts these basic quality of life issues out of reach. How can anyone suggest that we shouldn't want to keep that from happening? If you're against a cure, you don't need one.

  6. I am autistic and I like it that way. Some people do not, but I do. I do not mind the desire for a cure as much as I mind the pity-filled motives to find a cure.

    1. Well that makes perfect sense to me, Flutist. :-) Thanks for reading.

  7. This comment has been removed by a blog administrator.

  8. I'm an individual with autism who wishes there were a cure. I would like it for myself and anyone else who wishes to be cured. I'm not interested in forcing a cure on autistic adults above the age of consent who do not want one. In the same vein, they should respect my wishes and not hassle me, other adults, and parents of kids who want a cure. I realize this statement may be moot as there is no cure available and probably won't be in my lifetime (particularly at my advanced age) but that is how I feel.

    1. Thanks, Jonathan. That is what I was trying to express. We are all different. Also not all autistics are alike. I just get so unbelievably frustrated when adult autistics tell me what my child must be thinking. I happen to believe and trust Joe when he tells me that it makes his life more difficult. If he outgrows that desire for a cure and grows into his autistic self, I will be fine with that, too. As you say, the point is moot but I get so frustrated when adult autistics jump on my case for wanting a cure. My boyz are NOT them.