Help me explain to someone why we shouldn't eradicate autism

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Hi.

I was having Thanksgiving dinner with my sister and family (we celebrate this weekend in Canada). My sister is a neurotypical, suburban mother, married with two neurotypical children. They are not "rich", but fairly comfortable (fully paid for home, time shares, two fully paid for vehicles and the means to go on a few vacations every year and have nice clothes and things without carrying a any debt). They are just "perfect"

My sister is not a "bad" person, just a sheltered one. She cares about my autistic son and encourages different therapies to assist him to live to full potential (some of her recommendations are nonsensical, such as "DAN Doctors," some are reasonable, such as OTs used successfully by her friends who have children on the spectrum). She thinks that Autism Speaks is a wonderful organization.

I explained to her that I am not crazy about Autism Speaks because of their concentration on "finding a cure" rather than putting more $$$ for helping with inclusion. I also advised her that there are no adults with autism or aspergers on their board of directors or on their staff and that they do not consult with adults on the spectrum to help plan policy.

She wrinkled her nose at me at said, "Wouldn't you want your son cured." I said, "No, not necessarily. Autism is a part of what my son is. He will have his own way of doing things, but I accept him the way that he is and trust that he will grow and develop into a wonderful asset to society in his own way."

My sister was dumbfounded. She said that it would be better that autism could be prevented from the onset.

I tried to explain why neurodiversity is important. There is a good chance that having "autism" in the gene pool is protecting the human species in other ways. Also, the "gene" for autism might be in all of us - it might be a part of who all of us are - just some people are further on the spectrum then others. If we "eradicate" it - we might be eradicating Bill Gates and most scientists and mathematicians (as well as many other hardworking people in all areas).

My sister just scoffed at this.

Here is the thing - if anything ever happened to my husband or I, my sister is the only person within my family who I have who would be able to raise my children (my son is four, my daughter (neurotypical) is two). I do not want to to destroy the relationship with my sister however, I would invite anyone on this forum to help me find the words and the arguments to help sway her away from thinking that anything that isn't "normal" by her definition should be eradicated.

Please no "Canadian Rose sister bashing" and no foul language or violent thoughts to her. She is my sister.

However, in your words, explaining with level headed language, tell her why autism is not a bad thing and is important for humanity.

Thanks.

I have three arguments.

The gene pool of the majority of humanity is very narrow. We shall avoid narrowing it further. There may be some survival trait that one day is urgently needed associated with any trait that has survived this far. Otherwise, autism had probably disappeared naturally.

It appears that asperger - autism spectrum disorder - is associated with creativity and the ability to look through existing patterns and to think about something new. Temple Gradin wrote something like: If it only were for all those social types, we would still be sitting in a cave and discussing what to do. For humanity it is much more valuable to have more creative thinkers, than to get rid of one percent of people that may cause problems.

Third. People with autism may be extremely qualified for some jobs, if only you let them do it. There is a Danish company that employs people with autism spectrum disorders. You can rely on some of them to do every necessary test perfectly on a piece of software, even though it is impossible for normal humans. This is the type of people you want to test the software used to run the airplane you are taking a trip on, or indeed to test that every nut and bolt are fastened properly.

With the amount of creativity needed in the future, and the amount of highly critical technical jobs that needs to be done, we may actually have to worry about running out of people with autistic traits, more than thinking about how to eradicate that trait.

I hope this may be useful for you. Please let us know what the outcome will be.

I think you've done a good job already. Since the points you made are probably counter to what she is used to hearing it's probably to be expected that she would be resistant to them at first.

Just as you embrace neurodiversity, try to also accept diversity of opinion and that your sister may never see eye to eye on you about this and it does not necessarily mean that either one of you is right or wrong based on the viewpoints you each hold. But that doesn't mean she couldn't be a good caregiver for your son. Good luck to you.

(And for the record, personally I don't even know who I agree with in this debate between you and your sister.... I know it's a long-running debate in this community about autism speaks and finding a "cure" and how that is controversial to many, and I am still on the fence about this).

My sister isn't quite like that, but she doesn't understand the challenges of raising a child with special needs. For example, she is one who believes that most kids diagnosed with ADHD are lazy, and her way of dealing with them would be the same as you would a lazy NT. She is one of those "all kids do that" kind of people. She doesn't feel that raising a child with special needs of any kind is any harder than raising an NT child. She is also the guardian of my son if something should happen to my husband and I.

What I do is try to educate her as much as I can about autism and hope for the best. She was a wonderful parent to her children, and I think that after she has my son for a while she will figure it out, do what is necessary for him and he will be fine. It will be an adjustment for both of them but I have faith that they will get through it. I would imagine if your sister ever had to raise your child, she would come to many of the same conclusions as you. You don't really understand things until you live it, and it's then that's when the epiphany happens.

All you can do is educate her. Give her anything you can find that expresses the views of actual autistic people and let her learn that this isn't a bad thing, just a difference. She still see's it as a handicap, a disabiltiy, a disorder. Try to make her see, through literature, documentation, the words of the autistic community that there is more to this than the challenges it gives you. I read a wonderful article in a magazine from New Horizons called "The Greatness of Aspergers". It is this type of stuff she needs to read.

Often, in an attempt to explain certain things to my husband I print out threads and share them with him. Maybe you can share with her the views of people on this site but printing off certain things that make your point.

Hang in there, Pray to God nothing happens to you, and know that if something does your child will be OK because despite how your sister believes, she'll do what's right once she is involved.

I can only speak for myself:

I would not want my Asperger's to be completely cured although I would like to be able to take a pill sometimes and be normal for a while. Here are some of the reasons why.

1. I perceive things without being influenced by what people say or accepted “norms”. However I would never tell the judge that the next time they call me for that stupid low wage jury duty or he’ll never excuse me.
2. Asperger's made me more self reliant. Since I stink at motivating people or communicating to people that I need help I learned to do things by myself that normal people wouldn’t be able to do without a helper.
3. I’m used to solitude even though I hate it. Even in a crowd I feel alone so actually being alone doesn’t bother me any more or less. My guess is that you could probably lock me up in solitary confinement for a long time and I’d come out o.k. while normal people would probably lose their minds.
4. I can usually take two or more seemingly unrelated concepts and find a correlation between them. I noticed that most normal people have trouble doing this.


I’m sure there have been many instances in our vast human history where these abilities have saved the autism gene pool. People with Asperger’s may just be kind of Churchills waiting for a war.

My view....

If I had one single best argument for why autism should not be "eradicated" it would be this....

Autistic people often have super-genius potential. While I'm sure an NT could be the next wonder child who leaps science forward 200 years in a single generation, there is a good chance such a "wonder child" has their gift from some autistic factor in their brain.

It is possible the eradicating the gene that causes autism would end such incredible minds from being born.

It would be better to prefect ways for autistic people of all types to have fuller and better lives where they find an active role in society rather than throw out the proverbial baby with the bathwater.

Perhaps the best way to explain your point of view is to read this book and give examples of great historical figures who showed symtoms of being on the spectrum. Though, I wouldn't give her the book to read, as the title would possibly stop her from seeing outside her viewpoint.

'Asperger Syndrome – A Gift or a Curse?' Dr. Michael Fitzgerald.

I wish you luck, it is difficult to explain to some people that different does not mean wrong or bad. I know that some of my family have difficulty understanding that about me.

From my perspective, autism is what it is. Which to me means a neurobiological difference. I highly doubt Autism Speaks , or your sister will EVER change that. I would feel offended (which I have from MANY people) if they thought the world would be a shinier, happy place without it. If she were my sister, I'd ask her if it would make her feel better going to her nephews funeral? She'd look at me like I'm nuts, but essentially, if there were no autism, there'd be no nephew, not the nephew she has right now anyway.

This burns my *ss. I know many people who say they love me, or they love the way I think. Those same people when the going gets tough,.... eg. I need to leave due to sensory issues, or I fight full tilt on what makes sense to me at the time, only to realize later, that there were many other ways that also made sense.... that look at me and say things like "Why would you be so rude and just leave?" Or call me the 'R' word simply because it takes me a lot longer to come to their conclusion on certain things, or call me a freak if I melt down. They'd all love to see me 'better' ...somehow believing that this shows me they love me. It doesn't. It shows me that they do not accept me for who I am.

I see my son fight this battle every single day. I have teachers say things like "I would love to help Trenton, but he never asks me for help or tells me when he needs it." I'm pretty sure that if every single time I thought and believed that what I was doing was the best I had to work with, yet still got punished, shunned, discluded and publicly humiliated... I wouldn't ask for their particular help either. Their so focused on having him mainstreamed (which I'm partially thankful for), having him try to act like the rest, follow the herd, that they neglect to reward him for the awesome things that come from being the way he is. It was easier in many situations for them to 'believe' (usually based on another child's testimony) that my son was lying. Rather than accept the truth that Trent just doesn't lie, and if he did, it'd be blatantly obvious. Instead of insisting that his behaviour changed, based on another child's manipulation, if they would have accepted the fact that he wasn't lying, they could have utilized him in a much more positive way. After going to the same school from jk to grade 6, it wasn't until near the end of grade 6, at one of our meetings, they put out the fact that he's not a liar, as if I'd never realized that before. It took all of his elementary years, for him to get that mediocre little pat on the back. So now, he still 'feels' like the bad guy, even though in many, MANY situations he did nothing wrong. They were trying so hard to 'fix' him, that they missed TRUTH as an awesome quality he's had all along.

So, aside from my belief that it can never be 'cured' so to speak anyway, they definitely ought to be looking to accept and accomodate. This is why I have no problem whatsoever completely writing off anyone who doesn't accept me the way I am.... him too for that matter.

Even his grandparents still say things like "Don't worry, he'll likely grow out of it." So even with his family, he still needs to prove, prove, prove. And in my mind, that's bullsh*t. I certainly wish my parents were still alive. They may have been alcoholics, but they'd have accepted my son 100%, even if it turned out he was wrong. Afterall, that's what I was raised believing family should be about.

Depending on here experiences and views, maybe using homosexuality as a model would help. I.e. would it be good to cure gay people? Or prevent gay births if there was a pre-natal test.

I think connecting to value of a known individual, and thinking about the loss of ALL of their unique good qualities of that person, and that you can't extract a deep root and expect them to be the same person, may be a good point to make.

For all the struggles/pain the idea of cure to me seems the same as killing me, and replacing my body with someone who looks the same, but isn't me. Like Invasion of the Body Snatchers. --I think I'm not so bad that my soul ought to be tossed in the trash.

There's an essay I like here:

http://www.autistics.org/library/love.html

...though I think some people would call that view hopelessly
idealistic. There's actually a whole section of good essays at that site, under the heading "Curing Autism?"

http://www.autistics.org/library/

A lot of reading, but maybe something in there will be useful.

To me, this comes down to a question of, do you love a kid that's a little quirky and different, or do you love the kid DESPITE his differences? There are some people the will never get past the point of loving despite the difference and move to full acceptance. Everybody...NT or on the spectrum...has unique gifts and talents. I love my daughter's unique view of the world. I love that she is absolutely brilliant. I love her honesty. She makes us see things in a way that no one else in the world sees it. She makes me smile every single day. I've had other parents or teachers praise me for all of the work that I've put into being her mother (especially after they observe a meltdown). My response is always "Raising her has been more intense than what I guess a lot of parents go through, but I wouldn't change a thing...for every ounce of effort I'm rewarded with a pound of joy".

I don't know...maybe my view would be different if I were raising a kid with severe autism instead of an aspie. But to me, what my daughter has is just a difference that gives her extreme gifts in some areas and some weaknesses in others. Would I rather see her somewhere in the middle all the way across the board so that she could be "normal" or "average"? ABSOLUTELY NOT! I look at her and see someone with the intelligence, unique views, inventiveness, and focus to change the world. So what if she can't be in the house when the vacuum cleaner is running...she'll just have to hire a housekeeper when she grows up! Working around a schedule and keeping the sensory input down are such minor adjustments compared to the absolutely amazing talents she's been granted. God doesn't give incredible gifts without some challenges to go along with it....keeps us humble:)

That said...for your NT sister....I think it would be hard for her to see it this way because as human beings, we like to feel superior, even if it's subconcious. So it's easier from her point of view to see that she has normal children and you have a child with a disability than it would be to see that she has average children while you have one with incredible gifts and some challenges to go with those gifts. I guess I'm lucky that my brother and sister both have kids on the spectrum, and my husband's sister has one with ADHD and one with dyslexia....so we're all in the same boat. I think getting your sister to come around to your point of view might never happen...probably the best you can do is to is keep coaxing in the direction of neurodiversity.

Help me explain to someone why we shouldn't eradicate autism

Ok...here it goes....
Just an Idea, maybe it can be helpful.
Try to sensibly explain the simple fact that....
Because Mass Murder Is Frowned Upon In Most Places

Because it's our culture.

Oh and has anyone ever read 'Elijah's Cup' by Valerie Paradiz? Read it yourself before sharing it with your sister but I think it is good and relavant.

I can only speak for myself. No one at my job is capable of the work I'm doing. Remembering some esoteric change made 10 years ago by a person who doesn't even work here anymore, and pushing just the right proverbial button to resolve the problem in 5 seconds, AFTER 5 people have spent two days trying to fix this, and not only could they not fix it but they didn't even understand the nature of the problem?

I'm telling you, half of all the really good engineers and scientists throughout history have been autistic.