Treating versus curing autism - two separate goals?
I have no doubt there are parents who subscribe to neurodiversity anti-cure ideology although I do not understand why any parent would not want to cure their child of what is, by definition, a neurological disorder which restricts their ability to enjoy a full independent life.I think Harold is right in this sense: few parents would (or do) choose not to provide treatments for symptoms of their child's autism. I have yet to meet a parent who would refuse to offer their child speech therapy, occupational therapy, social skills coaching, or individualized educational services. And I suspect, were a pill available to alleviate sensory dysfunction or obsessive compulsive disorder (often symptoms of autism), that most parents (and adults on the spectrum) would ask for a prescription.Your claim that there are many such anti-cure parents is not one that I accept, not compared to the parents in every province and state in North America... who have been fighting to obtain effective treatment and cure for their children.Sorry but I don’t buy that claim.
Yet none of these treatments are cures. And none of these symptoms are "autism."
When we argue about whether or not autism, per se, should be cured, I don't believe we're debating about whether to help kids (or adults) improve speech, motor skills, academic skills or job skills. In fact, I suspect, we really can agree that all of these are worthy goals.
Rather, we're debating about whether the ways of perceiving and thinking about the world which are common among people with autism are differences to celebrate or disorders to cure. And our disagreements on this issue create a huge gulf.
Is it possible for people who disagree on such a fundamental issue to work together to achieve real and important mutual goals? So far, it seems, the answer is NO.
Comments
And as I stated, I never said that parents who are not actively trying to cure their children’s autism are “anti-cure”. Also, neurodiversity has no “anti-cure ideology” to subscribe to. Not the neurodiversity that I know.
I never made any claim about “anti-cure parents” and I think the comments you’ve built this blog post around only illustrate the point I tried to make in your last post - that some people prefer to attack others than find common ground to work on.
I commented about my experience - my autistic son just turned 21 and I’ve been active online and off in the autism community for many many years. I was pretty much called a liar. Mr. Doherty obviously doesn’t frequent the places, online and off, that I do or he would “buy” my claim. I didn’t claim a majority, I didn’t claim “most” or “all”. I know my feelings are not the majority but I know I am not at all alone. I have hundreds of emails personally thanking me for my point of view.
I can and have worked with people I have fundamental disagreements with. I’ve worked with people who have previously attacked me. Does anyone see the point in what is happening here though? I sure don’t. I don’t at all mind defending or rethinking what I’ve said or done but defending what I haven’t said really sucks.
The answer is yes — fervent and deep debate is the very sign of how much we all do care, know that the emphasis needs to be on providin the appropriate supports and services (as needed) for individuals throughout their lifespans (as needed). May the disagreements continue.
The answer would be yes, depending on of others being respectful of one’s opinion(s). There’s a difference between speaking with and being spoken at. This topic also depends on who is reading, a parent who always has hopes for any of their kids, or the person/ child who has autism and how they perceive themselves and their hopes, and what they may believe stands in the way of that.
As to the quoted above statement, I chose to treat the symptoms which is not a cure. One also has to know what the exact definition of “enjoy a full independent life” really is. Many people need assistance, through out life. I often need some help too. I don’t look at that as a bad thing necessarily. One may also need to ask the person with autism too, what they think of their enjoyment of life is.
The way I look at it is this. So far today, there is no cure for autism (last I checked) and I’m not sure there will ever be without being able to tweak a gene or two. No one knows who a child will grow up to be, or what their abilities will be; autism or not. I think one day there may be prevention. Just because I myself do not have the goal being a cure does not mean I wouldn’t accept that being another’s goal. For some children/ people, the causes may be different than it is for my child so it would be foolish to have an opinion one sided on this. However, since we do not know each child/ persons causes of autism, we must be careful as to what we promote for high hopes can be built.
You first really need to know the cause(s) before you can have a cure, but treatment and interventions are out there to help.
No one knows who a child will grow up to be, or what their abilities will be, autism or not.
Yes, thank you Sandy. If people like Mr. Daugherty would admit this, we would all be better off.
And once again, how does one compromise with a movement that advocates unproven and potentially dangerous “treatments” such as chelation therapy, HBOT and anti-virals? These kids need acceptance and accommodation, not magical thinking.
“there is no cure for autism (last I checked)”
Exactly… and exactly why it has never been my focus or goal.
“Just because I myself do not have the goal being a cure does not mean I wouldn’t accept that being another’s goal.”
It also doesn’t make you, or me, “anti-cure”. The fact that when asked, my autistic son says he doesn’t want to be cured doesn’t make either of us “anti-cure” either. No more than he is “anti-lobster” and I am “anti-tomato”. No thank you, not for us but feel free to help yourself.
Cure is such a loaded term. I think all are doing the best that they can for their children - look at the effective grassroots campaign that got insurance companies to pay for therapies. Yahooo
Anyone related to a person with autism advocates in many ways. Some have come to accepting autism and all that goes with it. Therapies , tantrums, sameness needed, just all that can happen. Some need to be there. While others qwest for a cure or fix my child is where they are. Acceptance of where we all are on the qwest is where we all need to be. But alas some will feel righteous and lofty not considering where others are in the journey.
Boy, the drug companies must eat this up! I have spoken with those who are for “neurodiversity” who were adamantly against a “cure” or even a treatment. The thought being we should allow people to sit in a corner rocking all day, as its there choice and a better evolved way to be.
I also know parents who have refused treatments and diagnosis for their kids because they fear how it will affect themselves, and their child. Not to mention parents who say they love their kids just they way they are, wouldn’t take a cure if it was offered.
And there are a bunch of us who are hoping that our kids or persons dx with autism (sorry neurodiveristists, won’t define you by calling you autistic)who can see clearly that life with autism can be brutal, and we need to help find some sort of cure or treatment that helps and also help them get social acceptance as they are now. (yes you can do both)
I think the problem is that people are ironically looking at this with an autistic mindset. Maybe they are not seeing the entire picture, looking at the future or at other people. To me, knowing that people may grow up with this disorder may come to live under someone elses care in homes and hospitals, is not good. I know living in a psych hospital is really bad and it will of course include at some point a bombardment of drugs.
We need to help people have a better quality of life, even if it means (gasp) finding a cure.
Do the people who believe that there is a cure for autism believe that the physical changes to the brains of autistic people can be repaired ?
Children have all basic needs. To Love and be loved as well as taught and teaching. Let’s put the differences aside and do the IEP with the schools.Make them individualize each student to their ability. Enhance their environment with knowledge and understanding. Every student is special and their needs must be met not just pushed along with others grouped as Special Education. Parents need to be involved to make sure schools and their environment are conducive to achieving excellance in each student.
To ‘cure’ means to restore a sick person or animal to health and ‘health’ refers to the general condition of something in terms of soundness, vitality, and proper functioning.
Who is to say that an individual with Autism is not sound, vital and functioning properly as he or she is made? Just because someone does not function as the majority of people function does not mean the person is not functional.
It means the person are different.
Yes, life with autism can be brutal, Kathy. That being said, life where no diagnosis exists can be brutal. That’s life and we all participate in that to varying degrees.
When parents say that they need to help find some sort of cure or treatment that helps and also help them get social acceptance as they are now, these parents aren’t really talking about individuals with Autism.
Social acceptance comes from without not from within. In other words, the cure must be for those who do not have an Autism Spectrum Disorder and who do not socially accept individuals with Autism.
Perhaps that’s the thing … we should all band together and start advocating loudly for a Cure for Ignorance Towards Individuals with Autism. I could definitely get behind THAT movement!
Brilliantly said Raven
It is obvious to me that many are simply unaware of what truely autism is. I have 3 autistic children and have spent many hours reserching natural and synthetic means to alleviate as many symptons as possible. I have had(by the grace of god) miraculous success. After reading the myriad explanations for autism the one that rings true for me is the one put forth by msgtruth.org
Whats not debatable is the amount of damage done to an autistic’s brain. Because of an imbalace in the primary neurotransmitters our kids brains are wired differently. No one is debating this. What should be debated is how this this happened. Scientist say they have discovered 6 genes that cause autism and explain the wiring that occurs in an autistics brain. What’s curious to me is that none of these” deleted” genes were found in the parents of the autistics that were studied. So all of a sudden we have millions of new entities called autistics. That doesnt even happen in hollywood.