Fix Autism?

28 Sep

If we could fix Autism, would we?  I recently attended a conference where a geneticist presented some very exciting advances in current autism research – leading to just that possibility. 

Dr. Alexander Kolevzon, from the Seaver Autism Center at Mount Sinai School of Medicine, stated that scientists have identified the gene responsible for Fragile X Syndrome (FXS) – a rare genetic variation which accounts for about 2% of autistic cases[1].  Fragile X is tied to a single gene mutation whereas, many other Autism Spectrum Disorder (ASD) types may be more complex and based upon a combination of genes acting together.  Dr. Kolevzon proceeded to say that researchers are currently able to identify the genetic causes for up to 40% of all autism cases.  (Autism, defined here, includes all ASD, including Autism Disorder, Aspergers, PDD-NOS, etc. ) 

Within the autism research community, autism is generally accepted to be a genetic condition with environmental risk factors.  This genetic predisposition to autism, coupled in some cases with one or more environmental factors (yet to be determined…perhaps maternal factors, infections or toxins) at key points in the growth of the fetus and young child, may lead to the development of autism.  So, there is a long way to go before all the causes are understood, but identifying the underlying genetic components is a huge step forward.

The Fragile X gene (FMR1) is a DNA mutation which in effect, turns off the gene.  “Normally protein products of FMR1 act to dampen the synthesis of proteins at synapses…  Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections [within the brain] do not develop normally.”  Researchers are now developing medication to restore “normal synaptic protein syntheses and improve function.”[2] 

Based on this ground-breaking research, Fragile X medication is currently undergoing trials in humans with promising results.  Medication and/or genetic therapies for other types of autism will presumably follow thereafter…

How very exciting – I was thrilled to hear about the progress!!!  I choked up, thinking about some of those parents who now have hope that within the foreseeable future, they might be able to ‘reach’ into their severely autistic child’s locked-in world and perhaps communicate with him or her for the first time.  And how amazing it would be for the child (by then probably an adult) to finally be able to break out of his/her shell and interact with the world at long last.  I can’t imagine anything more thrilling.

But then I started to think more deeply about the implications.  Upon initial hearing, one might think, “Fabulous!  Let’s ‘fix’ things!”  However, aside from the significant moral and ethical considerations of gene therapy (which I won’t go into here…), these autistic individuals would be dramatically changed at a very core level – they may lose or change the very essence of themselves – potentially resulting in a radically different personality, skill set and perspective on the world.  Would they want that?  It might be great for the parents to finally have a neurotypical child, but given the choice, would the autistic person choose this for him/herself?  Would that even be a good thing – for the individual?  For the family?  For society?   

Would I want Gregory to undergo a similar therapy to correct his Aspergers?  Sure, he might become more ‘normal’ in his behaviors.  And yes, life would most certainly be less confusing and difficult for him, but he wouldn’t be ‘Gregory’ any more.  Now, I’m sure the NT version of Gregory would still be a great kid, but I would miss my lovable, quirky, funny, amazing Aspie son.  No, I decided quickly, I would NOT want Gregory to undergo gene therapy, if and when it becomes available.  (Having said that, the choice would ultimately be his to make.  I would respect his decision, but I would mourn the loss of ‘my’ Gregory if he opted to try it.)

So, there is no ‘right’ or easy answer and each situation would need to be evaluated on its own merits.  For parents of severely autistic children – those who are non-verbal and not able to function within society to any significant degree, perhaps genetic therapy would provide significant benefits.  But for individuals on the high-functioning end of the autism spectrum, this genetic ‘fix’ may not be the best choice.  It is an intensely personal decision and the trade-offs, risks and rewards of gene therapy would need to be carefully weighed.

Many Aspies don’t feel that their Aspergers is a disability at all, but more of a difference – if not an outright strength!  (See Wrong Planet.com)  Entire forums are dedicated to accepting and appreciating the Aspie brain – for all its unique powers and perspectives – not trying to FIX it!!!

Dr. Temple Grandin, the renowned autistic author and animal scientist, believes that we, as a society actually NEED Aspies among us.  These are the people who are able to look at the world ‘differently’ and come up with new solutions to problems.  They are the individuals whose analytical, detail-oriented, precise talents and single-mindedness can hyper-focus on specific problems in order to research and solve complex technical or scientific issues.  In fact, it has been said that most of the technology (e.g. Bit Torrent) we enjoy (or hate, depending on your perspective!) today would not exist, were it not for AS.

“Some of our world’s finest minds, inventions, art and ideas belong to people with autistic traits.”[3] Among those fine minds that are thought to have had AS are:  Albert Einstein, Vincent Van Gogh, Gregor Mendel, Thomas Jefferson, Carl Sagan, Wolfgang Amadeus Mozart, H.G. Wells, Charles Darwin and Isaac Newton – very good company indeed!

In spite of having significant challenges with social skills, physical coordination, emotional regulation and sensory integration, Gregory is a remarkable, bright and talented person.  He is potentially one of those ‘great minds’ of the future.  He has many strengths and ‘uniquenesses’ that I would be loath to ‘normalize’ by fixing his Aspergers.  And Gregory too, is quite happy with his AS.  Yes, he acknowledges that it does make certain things more difficult, but it makes some things easier too.  He has accepted his condition with grace and dignity – focusing on the strengths it provides.  We love Gregory the way he is – in all his quirky glory….and so does he.

So, after weeks of focusing this blog on the challenges facing Gregory and our family, today I celebrate the many strengths and unique perspectives of my Aspie.  I wouldn’t change him for the world…


[1] Alexander Kolevzon, MD, “Advances in the Genetics of Autism:  Implications for Treatment”, 1st Annual JCC Rockland & Parent Support Network Conference:  Current Autism Research:  Practical Strategies for parents and Professionals – Meeting the Needs of Children and Youth on the Spectrum, (West Nyack, NY, 2009).

[2]Clinical Tests Begin on Medication to Correct Fragile X Defect,” US Department of Health and Human Services, National Institutes of Health, November 2, 2009.

[3] Fitzgerald & O’Brien, 2007 

About these ads

77 Responses to “Fix Autism?”

  1. ankhoneirosinfinitus September 29, 2010 at 3:52 am #

    I hate it when people see someone who is different and try to find ways to “fix” them. I’ve told my family that I would die before giving up the way that I think. Medicine is for the sick. Autism (especially AS) is not a sickness.

  2. Joanne Houldsworth September 29, 2010 at 8:00 am #

    The following comment was submitted by Dr. Alex Kolevzon to correct some of my misinformation above. Thank you for the updates, Alex!

    A few corrections are necessary to your blog:
    1. mapping of the entire human genome has already been complete.
    2. we are curently able to identify genetic causes of autism in between 20% and 40% of cases (not 50%)
    3. within the research community, autism is generally accepted to be a genetic condition with some 10% of variance produced by environmental risk factors not necessarily considered to be “causal.”
    4. trials with fragile x medicine in humans are already underway and with promising results so I would remove the 10 year estimate.
    5. these trials are not with gene therapy but with medication that may reverse the synaptic deficits associated with the genetic defect in fragile x

    best,

    alex
    Alex Kolevzon
    seaverautism.org
    alexander.kolevzon@mssm.edu

    • Joanne Houldsworth September 29, 2010 at 4:26 pm #

      I have revised my post to reflect the corrections indicated by Dr. Kolevzon. Apologies for the misinformation!

      • sharla September 30, 2010 at 10:12 am #

        Your article is very thought provoking. As the mother of a son with Asperger’s, it is interesting to consider what I would do given the opportunity to “fix” him. It is impossible for me to determine where Asperger’s ends and my son begins. The two are intertwined and I would fear losing one in losing the other. Thank you for the article. Very interesting information and beautifully written observations about your son.

  3. The Simple Life of a Country Man's Wife September 30, 2010 at 9:50 am #

    Your son is a very blessed young man.

  4. Lynn Bridge September 30, 2010 at 10:03 am #

    Congratulations on the beautiful blog!

    This ‘fix- don’t fix’ is sticky! For one thing, people who are focused on one or two things to the exclusion of everything else don’t realize how many opportunities to use their possibly extraordinary talents just fall by the wayside. It is hard to live up to one’s potential when a person doesn’t fill out forms, go to interviews, etc.! So, naturally, a person in this situation does not see what other possibilities there would be if she were more ‘normal’.

    There are, however, compensations to focusing on only one or two things in life and letting everyone else around you take care of the rest on your behalf! I’m sure great discoveries have been made in just this way.

  5. pursuenaturalny2008 September 30, 2010 at 10:12 am #

    Good, thorough article, especially with the correction by Alex himself! Will tweet this.

  6. wanderingwords07 September 30, 2010 at 10:43 am #

    Having grown up with and Aspie sister, had a highschool bestie with it, and atteneded a private college with many of them, I see nothing that needs fixed. Even for children with more severe autism. In the future my husband and I hope to be able to open our home to adopt a foster child with asbergers. Its a part of my life, I am a better person for it, I wouldnt ever want it to change.

  7. sweatereyes September 30, 2010 at 10:45 am #

    Thank you for questioning the necessity of “fixing” autism. When I was a young child, the doctor told my parents that he thought I was autistic, and that I should do a couple of test to find out. My parents absolutely refused. Thanks to their decision I got to grow up without any of the stigma, or the double thinking that I would have had. Instead they supported my artistic qualities, and tried their best to help my social difficulties. When I found this out when I was 19, I was shocked (my doctor was so nice as to casually drop it into a routine check up and asked if I was interested in doing some questionnaires about living with autism), but after some consideration I decided not to find out if I have it. I still live a very happy life, regardless of whether or not I am autistic.

  8. sherry4home September 30, 2010 at 11:02 am #

    Thank you for your perspective! I would not want to change my Aspie, either. While his struggles are heart-breaking and my patience wears thin at times, he is an amazing boy. I had not thought of the recent developments in that light.

  9. allthingsboys September 30, 2010 at 11:04 am #

    I feel like using fragile X as an example for treatment for ASD’s is not a good choice. My reasons are because parents with children who have fragile X have a lot more going on than just autism. Autism is only one aspect of Fragile X, and choosing a treatment for it is probably motivated by more than just the fact that Fragile X also causes symptoms of ASD.

    • Joanne Houldsworth September 30, 2010 at 11:49 am #

      I agree with you, Allthingsboys, that choosing treatment for Fragile X is based on many other factors, since that syndrome has much more involvement, both physically and intellictually. I used FXS as the first step in the research that may eventually lead to the ability to ‘fix’ other types of autism.

  10. Eric Jager September 30, 2010 at 11:14 am #

    Very well written and thought-provoking article which helps to draw a distinction between people with Aspergers and others who are not considered to be high functioning.

    Assuming that the potential for improved function would include self-help skills as well as communicaton skills, there would be no “fix-don’t fix” moral issue for me with respect to my son.

    • Barry Houldsworth September 30, 2010 at 12:12 pm #

      Eric,

      I think that is the point that is being made. Each family has to weigh the decision, and there is no “right” answer.

  11. Aisha September 30, 2010 at 11:28 am #

    hi, I read about autism and this is really new one to me. Well, I believe that environment around himself would change him too slightly…. But I guess he also create his world soon so it would be difficult to be get better soon.

    You work so hard for your son and I cheer you as a best mother who do your best for your son :D Best effort and wish you spend good time. I liked your research i mean what you attended and your writing. I hope he, also will come to my country !!

    Anyway thanks for sharing :)
    Aisha

    • thebehavioranalyst September 30, 2010 at 12:33 pm #

      Aisha brought up an important point – environment could make changes too.

      This new research is fascinating. Though we really do not know HOW this possible synaptic altering medication would affect personality and we do not know as a definite WHAT will be restored. Our personalities and skills are shaped behaviorally by varying and numerous factors – genetics/physiology is just ONE factor, ONE piece of a complicated puzzle.

      On the other hand, many take medications to make changes; decrease pain, increase stamina, alleviate psychiatric issues, to lose weight, improve physical health etc – Another example, people engage in various types of therapies to change themselves hopefully for the better.

      Though I can understand the viewpoint that change can bring uncertainty. Change is different. Change is not always for the better. Change also involves acceptance.

      If all of this new research does work and helps others, my hope is that it will bring about positive changes to improve lives. Only the future will tell …

      Very good thought provoking blog post by Joanne. Thanks!

  12. Barry Houldsworth September 30, 2010 at 11:33 am #

    Congratulations on being Freshly Pressed!

  13. Ruby Craft September 30, 2010 at 11:49 am #

    I read what I can on this subject. Everyone is an individual, so each case needs to be handled in its uniqueness. Many people have overcome huge obstacles in life to become what they have dreamed. You can’t ignore this, but you have to teach how to overcome some of its qualities. Accepting your family member for who they really are is part of the freedom you give them. These are just thoughts that come to mind.

  14. Anna and Her Biro September 30, 2010 at 11:50 am #

    Ah this is brilliant! As humans we are always seeking to ‘fix’ something yet we don’t often think about what we may lose within the process.
    Thanks for blogging and congrats on getting being Freshly pressed!
    http://www.meandmybiro.wordpress.com

  15. notesfromrumbleycottage September 30, 2010 at 12:11 pm #

    Congrats on being honest enough to say maybe you wouldn’t use a treatment to ‘cure’ your son. These are tough decisions and you do what you think is right. Good post and great food for thought.

  16. eviejane September 30, 2010 at 12:18 pm #

    As a SpEd teacher of 15 years, I’ve taught many different populations, but Spectrum kids are my favorite. I love the way they think and process and interact with the world.

    I’m not sure if I’d want to “fix” my kids. First, there’s nothing wrong with them so “fix” is probably not the correct term. Second, I agree that they may lose their personality, strengths, and their very selves if the therapy was introduced.

    On the other hand, if it could be done in moderation so that AS kids could be just a step closer to NT, then I might consider this. Just enough therapy to help us to understand each other but not enough to change who they are.

    Excellent post!

  17. wadingacross September 30, 2010 at 12:23 pm #

    On a side note, something I find interesting is that there are two conflicting numbers being circulated in the media – in ads and by advocates – concerning autism. 1 in 160(ish) and 1 in 110 chances for autism. Hello? That’s quite a disparity. My wife works with special needs children and she notes that she sees quite a number of children who’re frankly misdiagnosed because so many of the symptoms of autism and diagnosis of it is so broad. As she noted, she could be diagnosed with a high form of autism because she shares some of the symptoms. The sad probability is that it is being over-diagnosed in too many children. The same with ADHD, the same with bi-polar disorder. It’s not to minimize the reality of the disease/disorders, but it does bring a certain level of fear into it, and negligence. Autism has become one of the new “it” diseases. That said, certainly it is shocking to see the rather meteoric rise in occurances that there has been over the last few decades, and I suspect that a number of factors are behind it, not just one singular aspect. Look at how much we’ve been messing with our food, resorting to soybeans way too much, and it apparently acts like a hormone in our bodies. Look at how many ‘odd’ people hook up now due to the internet that two decades ago probably would never have connected. My wife notes that it’s quite interesting to see that more often than not, at least one parent – often both – are a little “odd”, and have an autistic parent. And then there’s invitro fertilization. There seems to be quite a correlation between that and increased risks for birth defect/disorder issues. We are basically forcing our bodies to do something it’s telling us it does not or is not naturally set up to do! Most miscarraiges are because something was wrong with the baby. And so, instead of spending thousands of dollars on adoption, we spend thousands of dollars on invitro, and selectively kill on purpose the unborn… or freeze them, and subject them to increased physical risks all in the name of frankly, selfishness.

    Sorry, not originally intended as a rant. Just a tangental observation on the whole autistic/asperger issue going back to the contradictory numbers quoted, 110 and 160.

  18. wadingacross September 30, 2010 at 12:46 pm #

    CDC- 1 in 110

    http://www.cdc.gov/ncbddd/autism/index.html

    Autism Today – 1 in 166

    http://www.autismtoday.com/articles/1_in_6.htm

    These are just two sites. Punch in the numbers on an internet search and you’ll come up with a plethora of sites promoting/using those numbers. Both numbers are being promoted at the same time in radio ads now (2010). If the numbers are rising in prevalence, that’s fine, but then either someone’s doing some shoddy updating, or they’re doing it for an alterior motive.

  19. chavisory September 30, 2010 at 12:48 pm #

    I think that we should be very, very careful of the law of unintended consequences before deciding that autism needs to be fixed or cured.

    I think we have a responsibility to continue trying to understand what it is and how it works and how to use that knowledge to give autistic people more communicative ability, resources, power, and choices about their own lives.

    But given the people you list, and many more, who are thought or known to have had ASD’s, who have made major contributions to science, art, music and technology, including Alan Turing whose code-breaking quite possibly gave us the victory of WWII and who laid the foundations of all modern computer technology, as well as the thousands of unnamed, unknown people with ASD’s in ordinary, unglamorous jobs who just help keep society running on a day to day basis in ways that most people probably don’t even notice or think about….I think we’d want to be extremely careful in the consideration of whether we really want to, or even could, do without autism.

    I think the historical record is pretty clear in the evidence that we would not really want to, if we had any clear picture of what we’d lose.

  20. wadingacross September 30, 2010 at 12:50 pm #

    1:166

    1:110

    Do internet searches on both of those ratios in relation to autism and you will find a plethora of sites using those numbers. Either there is some shoddy lack of updating going on, or there are some alterior motives. Either no one really knows, or there is hard data. If the prevelances are rising, that’s fine, but both number ratios are being promoted in the media, in ads, certainly on the radio and I guess too on tv, today (2010).

    • chavisory September 30, 2010 at 1:34 pm #

      There is some lack of updating going on, and there is some rapid change in diagnostic rates going on, and there is a lot of debate about whether the higher rates are due to an actual increase in autism or due to awareness and improved diagnosis. Current data, depending on the study, ranges from about 1 in 100 to 1 in 150, and that range seems to hold constant across industrialized nations. I don’t think there are ulterior motives so much as that we do not know for sure what the number is, because of the problems inherent in counting autistic people.

      • wadingacross September 30, 2010 at 2:08 pm #

        I guess part of me wonders why we even care about the statistics? I was born with birth defect(s) that often occur in conjunction with each other. I’m half deaf because of it and had to have corrective surgery as a teen. I never went thru with the cosmetic surgery I could have had to look “normal”. Normal is quite subjective.

        As I noted, my wife works with special needs children and loves a great many of them. Sadly though she sees that some of these children are often used as pawns by their parents to “game” the system. A couple parents want their children to be autistic so that they can be part of the “group”. A couple of parents have gone so far as to withhold medication from their child so that the child will act out. She then comes back and says, “See? He needs this program.”

        My wife runs into so many children that clearly should be diagnosed or receive services and many that are incorrectly serviced or shouldn’t be at all. And yet, the system is cut and dry yet open to abuse at the same time.

        Were any of our children to be diagnosed autistic or having aspergers, I suspect that we’d “live” with it, unless it affected their quality of life to some major degree. For the most part, you adapt and modify your life and theirs. My wife sees too many children with far greater problems whose parents absolutely refuse to believe that their child won’t progress cognitively, and so they continue to receive services and training that is really useless, instead of training that is or would be effective for the child’s future.

        Just as with the invitro issue, I think too many parents are being selfish, or just as sadly wrong, not thinking things thru. Just because we have certain advancements and availability to medicines and technologies doesn’t mean it’s good or should be used across the board.

  21. thorsaurus September 30, 2010 at 1:10 pm #

    Parents of children with autism are faced with tough decisions every day. It is a balancing act between restricting opportunity and keeping the child (and others)safe and happy. I would hate to see a change in my son’s humor or tender heart, but I would have no problem saying goodbye to his self-mutalation, hitting and odd sleeping habits.

    As you can see, this balancing act resembles a pass across a tightrope …, made of dental floss, strung over Niagra Falls, on a windy day, when alligators have been released in the river, packing machine guns.

    Thank you for bringing a thoughtful take on ASD to F.P.

  22. Scott B September 30, 2010 at 1:17 pm #

    I have not been formally diagnosed, but based on years of reading and observation, I’m confident that I have Asperger’s. As a 40-something adult, if I had the option to “fix” this and be neurotypical, I would take that in a heartbeat. There are a few glamorous success stories, but I believe these are a considerable minority. What I wouldn’t give to no longer be the eccentric one.

  23. healingautismandadhd September 30, 2010 at 2:23 pm #

    Interesting post. I come from a completely different camp on autism, it’s increase in numbers and recovery. I see it as kids that have a genetic predisposition for certain biochemical functions in their body to be affected by environmental assaults. I am in the process of recovering my son. His high-functioning autism diagnosis does not define him. His sweet, enthusiastic personality does. He’s happy, healthier and more able to interact with us and his peers, thanks to treating his autism with biomedical treatments. I believe that in most cases of autism, it’s not solely a disorder of the brain, but a disorder that AFFECTS the brain, the immune system and the gut. My latest post on my blog is titled: Recovery from Autism is Possible. It’s a positive message, that offers parents hope.
    Joanne
    http://www.healingautismandadhd.wordpress.com

  24. joshsuds September 30, 2010 at 2:41 pm #

    While I can certainly see your point, I think it’s great that the option for genetic therapy may be a reality in the near future. I know someone with Asperberger’s who struggles with the knowledge that he is different from others in his high school. While those of us who know him think he’s great with or without it, I’m sure he’d love to have the choice to be just one of the crowd.

    • rmcmahon411 September 30, 2010 at 3:09 pm #

      You’ve touched on an issue that’s so close to my heart. I have struggled with the idea that I’m falling in love with my son’s quirks, the things that make people see him as “different” as well. He’s my Gabe, and I don’t want to lose him. I’m not sure if I could make that decision myself.

    • sorceressofthedark September 30, 2010 at 3:14 pm #

      My youngest son, age 25, was diagnosed with Asperger’s Syndrome before 1st grade. As he traveled through the school system, they had such difficulty understanding him. I certainly didn’t. I thought he was such an interesting child who had a wonderful take on the world…if only he would talk more about his world.
      Now he tells me that what he has to say is important, and what he doesn’t have to say is trivial…lol. More people should be like that. Thank you for your blog! Our sons are lucky. They have Moms who see them for who they are: special people that can make the world a better place for humanity.

    • Joanne Houldsworth September 30, 2010 at 5:15 pm #

      Yes Josh, if and when a ‘fix’ is available, at least people would have a choice to make – whatever decision they ultimately come to.

  25. urbannight September 30, 2010 at 3:28 pm #

    For older children and adults, learned behavior is pretty well established. Personality would also essentially be fixed. If this treatment would simply open the lines of communication between the autistic person and his or her family, the it would be a great idea. But I’m not so sure of using it for people with Aspergers. Or maybe the two I’ve know were very high functioning for Aspergers. One was a college student and the other was a wife. The college student seemed to have more obvious Aspergers for the lack of a better word. But he was succeeding at school and would probably be able to hold a job. He was more of an aquantance rather than a friend. My friend seemed more ‘normal’ that the college student but because of a few ways in which her aspergers affected her it was very hard for her to hold down a job. Still, both of them were intellegent and articulate. I think the ultimate determination of whether to use such a treatment would be the over all and long term benefits to the individual. It seems like needless medical treatment for people who are able to communicate and integrate with eveyone else in a way that lets them lead happy lives.

  26. michaeleriksson September 30, 2010 at 3:39 pm #

    Speaking for myself: I do not know whether I am an aspie or just an extremely introverted excentric. However: If someone tried to “cure” me, irrespective of which alternative applies, he would have to count on hardest resistance to very end, be it through lawyers or physical violence.

  27. Joseph Damiani September 30, 2010 at 3:39 pm #

    I’ll be 32 years old this coming month and having Asperger’s I would opt out of gene therapy because it would indeed diminish who my family has grown to love with my many quirks and disadvantages.

    I was lucky to have a nurturing family that supported my disability and told me that if I wanted to accomplish something it can be done. So throughout my life I’ve gotten used to to my condition and have overcome on-going obstacles. No one believed I’d graduate college which I did in four years. No one believed I’d become a team leader over a department at Sam’s Club which I did that too. Now I am pursuing my education in web developing. All seemingingly impossible with Aspergers.

    Sure I’d like to break out of my shell and finally have friends instead of living my life alone in my house with my dog. But some people have come to terms that they’ll never have a relationship that will lead to marriage. That doesn’t mean I’ll give up but I have come to terms that I’ll be alone. That is where gene therapy would be good. But I feel that gene therapy needs to be implemented at a very early age so it doesn’t become difficult for the child when they are growing up. It could potentially damage there self esteem and personality. Otherwise, this was a very good article you wrote.

    • Joanne Houldsworth September 30, 2010 at 5:10 pm #

      Joseph – Good point about the benefits of starting gene therapy at an early age. And keep up your good work – I look to people like you to be the role models for my son – showing him what he can achieve, in spite of his challenges.

  28. JIm Hagen September 30, 2010 at 4:26 pm #

    By all means we should fix the underlying genetic problem if we can. But the reason that there is so much autism and it is so debilitating is because of the biggest environmental risk factor–sensory bombardment in early childhood is getting worse all the time. Kids need routine, organization and quiet, not 16 hours of television and stimulation.

  29. there's-no-b-in-aspergers September 30, 2010 at 5:00 pm #

    I found this post to be an interesting read as someone with AS.

  30. Amanda Broadfoot September 30, 2010 at 8:40 pm #

    What a lovely and thought-provoking post. My four-year-old is a high-functioning autistic boy, and I’ve struggled with this question a lot: what does a “cure” mean, if one were available.

    I don’t think my son needs to be cured. He needs to be supported, encouraged, loved, and he needs the right environment in which to learn. Those are all things I can do, without a cure.

    Sure, he has challenges — particularly when it comes to communication. But I’d never want him cured of his miraculous memory, beautiful singing voice, or any of his other gifts that come with the autism package.

  31. Heather Holbrook October 1, 2010 at 1:37 am #

    Loved this post! As a mother of a talented Aspie, and an Aspie myself, I couldn’t agree more. There are things that I wished were easier for my son and I. I wished “fitting in” was easier. But having the freedom to not have to fit in, because we actually, physically are unable to is awfully nice at times! When the emperor doesn’t have any clothes, we have no qualms about saying so!

  32. text me, love mom October 1, 2010 at 1:42 am #

    Wow – what an informative post. I’ve learned so much. Yes, what do we ‘fix’?

  33. Heather Holbrook October 1, 2010 at 1:50 am #

    I forgot to add this comment, which I think I posted on my blog several months ago, concerning the supposedly high increase in ASD over the last several decades: I can’t speak to the incidence rate of individuals who are profoundly affected. But in the 6 years that we have been aware of my son’s and my high-functioning ASD, we have, of course met many other children with Asperger’s Syndrome through school and therapy groups. And, so far, I have not yet met one child with Asperger’s Syndrome who does not also have a parent who either admits to also have AS, or who’s spouse is 100% certain that that other parent has AS. Since my son’s diagnosis, I have realized that I have AS, one of my parents(though that parent doesn’t think so) most likely has AS, and my AS parent’s mother probably had it too. Quite frankly, I can see AS in quite a few of my relaties on that side of the family, while it is not at all existent on the other side.

  34. unstrangemind October 1, 2010 at 4:01 am #

    Thank you for a great post.

    You might be interested in reading a novel by Elizabeth Moon called “The Speed of Dark.” Moon, who has an autistic son, wrote this philosophical “soft science fiction” book about a world where a cure for autism is discovered. An autistic man who has always dreamed of being an astronaut but was unable to follow through on that dream, due to his autism, decides to take the cure.

    The novel is very well-written and brings up so many issues related to a cure for autism that it’s “must reading” for anyone interested in the topic.

    • Joanne Houldsworth January 24, 2011 at 12:41 pm #

      I did recently read “The Speed of Dark” and found it absolutely fabulous and very thought provoking! Thanks so much for the recommendation!

  35. allodoxaphobic October 1, 2010 at 5:05 am #

    I love this blog and the comments people have made. As I wander round the webiverse and read the vitriolic nonsense written about autism and those who are autistic I often shudder at the misinformation and the sheer cruelty in the way people describe the condition, its ’causes’ and its prognosis. To hear people writing with love about people with autism, debating whether it is better to cure it or embrace it, is truly refreshing. I am delighted that WordPress put it on the front page of their interesting blogs, because I would have missed it otherwise.

  36. LaboriousLiving October 1, 2010 at 5:46 am #

    You should check out an old podcast done by NPRs radiolab. It’s called ‘Who am I’ and I think it would answer a lot of questions for you.

    http://www.radiolab.org/2007/may/07/

  37. Amy Mattila October 1, 2010 at 7:56 am #

    I recently read about the findings of Biologist Dr. Hulda Clark regarding Autism. She found out that all autistic children had a few things in common: mercury or led poisoning (in the brain) and parasites in the brain. When these two environmental issues were fixed the children became normal (if no new infections with parasites came along). For cleaning the metal toxins from the brain she used Thioacid 100mg a day in honey and for cleaning the parasites she used Blackwalnut hull tincture and wormwood capsules and a machine called Zapper. More details in her book “Cure for all diseases”. Her book is really an eye-opener for anyone wanting to find out for the real causes of sicknesses! I warmly recommend reading the book http://www.amazon.com/Cure-Diseases-Hulda-Regehr-Clark/dp/1890035017!

  38. michaeleriksson October 1, 2010 at 8:24 am #

    Last I heard, the mercury/lead theories had been debunked. Parasites sound entirely ridiculous.

    Wikipedia says

    Clark’s claims and devices have been dismissed by authorities ranging from the US Federal Trade Commission and Food and Drug Administration to alternative medicine figures such as Andrew Weil as scientifically unfounded, “bizarre”,[3] and potentially fraudulent.

    Ironically, she appears to have died of cancer—something which she claimed being able to heal. (Again according to Wikipedia.)

    See http://en.wikipedia.org/wiki/Hulda_Regehr_Clark

    • Amy Mattila October 7, 2010 at 1:04 pm #

      Well that would be a day when FDA would want to actually cure people… they are in marriage-alliance with Pharmaceutical companies. And what do they want? In one word – MONEY. Their interest is to get people hooked on medicine, not to cure! So if you keep FDA as you authority to what works, then you’ll be using drugs for the rest of your life.

      I rather try to figure out the causes of sicknesses and eliminate those. I personally have gotten big help to my health by using Dr.Clark protocol and similar help I have seen with my family members and friends. Real life-changes! So I do know her methods work and after studying her methods I also know they are scientific.

      I also know a few doctors using a machine based on the same scientific methods than Biologist Dr. Hulda Clark was using. Her methods of diagnostics are spreading and I believe after 10-20 years they will be used more widely. Unfortunately many people are suffering in vain until that…thanks to FDA and their

      Here is an example of what FDA is doing http://www.burzynskimovie.com/

      • michaeleriksson October 8, 2010 at 8:06 am #

        In the meantime, I have had the opportunity to read up on this quack. The reading is what brings me to use that particular word—she was a quack. This is the expressed opinion by a great variety of qualified judges, including several dealing with alternative medicine. Even a medicinal layman can spot obvious problems with her claims and her lack of scientific method. (The Wikipedia page is a good starting point for other links on the topic.)

        I do not deny that the pharmaceutical industry wants to earn money, rather than curing people; however, it is important to remain on the right side of the enlighted-sceptic/conspiracy-theorist border. You may, BTW, want to ask yourself why this quack charged top-dollars for her services, when she could have made the exact details, technical specifications, etc., available for free: Greed or a wish to better man-kind?

        Finally, your personal experiences are irrelevant for a number of reasons, including the possibility of a placebo-effect, coincidence, simultaneous life-style changes, and confirmation bias. Notably, similar claims of personal experiences are made by a multitude of other groups, including the patients of faith-healers, hoodoo practioners, and homeopaths.

    • Amy Mattila October 11, 2010 at 6:15 am #

      I can assure you I did not make any lifestyle changes when I started to use Dr. Clark Bioresonance therapy. Neither did my mom who got rid of her asthma-medication immediately after the first time in the therapy and psoriasis that healed little by little also (something she suffered for 30 years). I have in my friends and relatives about 50 people who have gotten real help from Bioresonance and not only the methods used by Dr. Hulda Clark, but also from Scio-machine developed by one of the Nasa Scientists.

      What comes to the information that I trust, I must admit that I don’t trust 100% to things written in the newspapers or in the Wiki. I trust more first-hand personal experiences. Of cause I do not blindly try everything without doing some research of the matter first.

      I do hope that those parents with autistic children and other health problems check out these new methods that many have gotten help from!

      • michaeleriksson October 11, 2010 at 12:37 pm #

        And I hope that none of these parents waste their time, hope, and money on this quackery—which will give them no benefit outside of the realm of psychology. There is plenty of “evidence” that e.g. faith-healing, hoodoo, whatnot, works on a casual inspection (including impressing personal anecdotes), but this turns to nothing when scientifically investigated. We have mind-tricks, placebos, co-incidences, and other “unreal” effects—nothing more, nothing less.

  39. Amy October 1, 2010 at 11:11 am #

    Thank you for this post. I have NO idea what I would do if there were a “magic pill” or other “fix” for my son’s autism. I only know him the way he is now, and the way he is now is who I love. The Nebula-award winning book “The Speed of Dark” addresses this in a particularly compelling way, though it is fiction. I have never thought of autism as a disease, and I have never sought to make my son “normal.” That being said, I am glad there are strides being made to help the autism community and individuals on the spectrum.

  40. eurybe08 October 3, 2010 at 4:07 am #

    Nice Post! I really hope someday a convenient and affordable cure will be developed someday, as for now the I think the cure against for this ailment is therapy.

  41. michvayn October 3, 2010 at 8:39 pm #

    This is a fantastic entry, I work with individuals who have autism and I can see how it would be so difficult for parents to decide if they wanted to use science to change or ‘fix’ their children. Personally I don’t view it as something that needs to be fixed, each one of my guys is so special and unique in their own way it makes them who they are no different then myself or any other regularly developing individual, but I can see how this may all be so different through the perspective of a parent.

  42. magstheaxe October 4, 2010 at 1:17 pm #

    I am the sister of two young men who are on the low-functioning end of the autism spectrum, and I interact regularly with the parents and siblings of other people who are also at the low-end. Thank you for recognizing that people for whom autism is actually disabling may be in favor of a treatment or cure.

    For those operating at the high-functioning end of the spectrum (many people who have been diagnosed with Asperger’s, for example), a cure many not be wanted or even necessary. More power to you, if that’s the case. But for those of us who have no choice but to speak for our family members—because their autism renders them incapable of speaking for themselves—I can tell you that a cure cannot come quickly enough. Especially considering that at the low-end of the spectrum, autism tends to come packaged with disorders that even the most Pollyanna-ish person would struggle to consider favorable (severe mental retardation, severe anxiety, and severe depression to name a few). If you want to get an idea of what life can be like for people on the low end of the spectrum, read this essay: http://dir.salon.com/story/mwt/feature/2003/09/27/autism/print.html

    I do take issue with Temple Grandin’s assertion that scientific and technological advancement is solely the province of Aspies. This is incredibly dismissive of the scientific contributions of those people who aren’t on the autism spectrum. What’s more, it completely fails to understand the importance of social skills to the scientific and technological communities. Trust me when I tell you, if you ever get to hang out with any scientists in social settings, they are as good at (if not actually better at) social skills as the average person, and far better than the average Aspie. They share ideas, swap lab stories, compare notes, build relationships and agree to work together, etc., etc., all of which play a huge, unsung role in advancing science and technology. And that’s on top of the fact that non-autistic people are more than capable of being detail-oriented, analytical, and single-minded when it suits them (as opposed to autistics, who have no choice but to be that way all the time). The notable people you list (Einstein, Mozart, etc.), who are believed by some in the autism community to be autistic despite all evidence to the contrary, are perfect examples of that.

    In short, to build on an analogy that Grandin once used: it may have been an Aspie or autistic that figured out that the pointed stick made a good hunting tool, but it was a non-Aspie/autistic that told the other cavemen about it, and still other non-Aspies/autistics who actually refined it into a spear.

    Finally, on the issue of gene therapy changing one at a core level: that’s only an issue if you consider your autism a core part of your being. And even if you do: so what? People change the parts of their core being all the time to make themselves happy. They see therapists and take medication, so they don’t feel depressed or angry or manic all of the time—that’s certainly a radical personality change due to being able to regulate their emotions. They use the latest in disability technologies, so their cerebral palsy or blindness or multiple sclerosis (or whatever) doesn’t get in the way of the things they want to be able to do—are they denying a core part of their being, or mere bringing it under their control?

    (You can argue that just about anything is a “core” part of one’s being, and yet see how people change those very things daily. They lose/or gain weight. They cut or color their hair. They get tattoos, or have tattoos removed. They wear colored contact lenses. All that and more.)

    Do they lose their little quirks and ‘uniquenesses’ that we love? Sure. But they also replace them with quirks and ‘uniquenesses’ that we love just as much. They still remain bright. They still remain talented. They gain new strengths and abilities. In other words, they simply change, and in most cases for the better. (I’ve never understood why people automatically assume any change will be for the worse). All people on the autism spectrum deserve the chance to make any change to themselves that they want.

    • Joanne Houldsworth October 4, 2010 at 1:26 pm #

      You are correct that there are many sides to the story. It will be wonderful to one day have the option of treatment and then each individual and/or family can decide for themselves what is best for their situation.

    • michaeleriksson October 7, 2010 at 12:08 pm #

      While I agree that it is easy to lose sight of what things look like on the other end of the spectrum, I find your take equally one-sided. Notably, my feeling from both your post and the article you link to, is that you speak more of the parents’/care-takers’ situation that the autists’. While there is nothing wrong (quite the contrary) with also shedding light on the parents, it is wrong to do so when using formulations implying that you speak for the autists. (Bear in mind e.g. that Autism Speaks does just that—and is heavily criticized by many autists.)

      Notably, it is wrong to use “normal” measures to gain insight into issues such as the happiness (or lack thereof) among autists. Even in those cases when they are unhappy or have (what they themselves consider) real problems, the question is whether these problems arise from the condition or the combination of condition and environment—and in the latter case, the true cure is to adapt the environment to be more “autist friendly”. The level of mental retardation has historically been exaggerated by use of tests that rely on an “NT” way of thinking. Etc.

      (The above should not be taken as a denial of problems—just a caution that your comment errs just as much as those you criticize.)

      Looking at inventors and the like: I would modify Grandin’s statement to not speak of aspies but of INTx (on the MBTI-scale). With that correction and the possible modification of one-or-the-other letter in a specific field, her statement, by-and-large, agrees with my opinion. (Generally, I suspect that many who had an “Aha! I am an aspie!” experience when they first read about Asperger’s would have had an “Aha! I am an INTx!” experience, had they been exposed to MBTI first—and not reevaluated this experience when later exposed to material on aspies.)

      Notably, I would only agree with the first part of “[...] but it was a non-Aspie/autistic that told the other cavemen about it, and still other non-Aspies/autistics who actually refined it into a spear”: The refinement was likely disproportionally often made by introverted thinkers—while someone with an extroverted mentality convinced the cavemen that either “the revolutionary spear puts the out-dated stick in the shadows” or that “this newfangled spear is inferior to the proven stick-technology which can be had for just $99.99 from YOUR partner for sticks”.

      Regarding “core of being”: Here I find myself in violent disagreement. If you want to change your own core—go ahead. Do not assume that others will too. Also note that the changes you list are mostly very far from autism in their impact on who someone is. In some cases, e.g. eye-color, they are ridiculous off the mark—do not confuse a books content with its cover.

      When you say “I’ve never understood why people automatically
      assume any change will be for the worse.”, you miss the point: The question is not whether the change is for the better or the worse, but whether someone would still consider himself the same person before and after. Merely having the same memories, let alone the same body, is not typically enough for being the same person.

      You almost get the point with “All people on the autism spectrum deserve the chance to make any change to themselves that they want.”—specifically, “any change to themselves that they want”: Not changes others want, not changes that the individual autist does not want—but changes that he, himself, chooses.

      • magstheaxe October 17, 2010 at 2:15 pm #

        Michael, you fall in to an equal amount of one-sideness (starting with the fact that you cite Meyers-Briggs, which isn’t even close to a reliable indicator of personality type; see http://en.wikipedia.org/wiki/Myers-Briggs_Type_Indicator#Validity for a good overview of some of its problems). Different people consider different things part of their core being. For example, just because you don’t see eye-color as part of your core being doesn’t mean someone else doesn’t. I’m African-American, and using colored contacts to change one’s eye color to look more “white” is frequently considered race betrayal, because it changes what most consider a core part of being African-American in order to conform to a white beauty standard.

        My bottom-line is this: there are autistics out there that, by ANY measure, need a cure. High functioning autistics DO NOT SPEAK FOR THEM. For a community that prides itself on inclusiveness, I’ve been very disappointed at how low-functioning and mentally disabled autistics are marginalized and ignored by the autistic community.

        You don’t want a cure? Fine. Don’t take one. But remember that your ability to cope with your disorder is in no way indicative of someone else’s ability to do so. Don’t fight against a cure for someone else.

      • michaeleriksson October 18, 2010 at 6:13 am #

        I disagree with your characterization on a number of points. At least:

        o Discussing MBTI is not one-sided. MBTI is a classification tool that can be highly useful to get rough bearings and to introduce some new concepts—as such, it broadens the discussion.

        (As for weaknesses, I am well aware of the problems MBTI has. These, however, are not relevant in this context. Further, any classification has problems, including those used for the autism spectrum.)

        o To consider e.g. eye color a part of ones core being displays extreme shallowness and lack of understanding. The example you give is not objectively valid. Notably, considering “african-americanity” as a part of ones core could be possibly be reasonable (for those so inclined); however, to confuse external signs with being or not being African-American misses the point. Further, the problem you cite is not truly about eye color—but about the act of deliberately distancing oneself or adapting a “foreign” beauty criterion. It is the perceived betrayal that is important, not the eye-color per se. (Notably, if the normal eye colors were reversed, the people would still be the same. The only major thing changing would be what eye-color was considered “proper”.)

        o There may well be autists who would truly benefit from a cure. I have not said otherwise. What I have said: 1. You give the appearance of speaking for the care-takers rather than the autists. 2. It is important not to jump to the conclusion that someone needs (wants, would benefit from) a cure because he does not fit someone elses standard—the criteria has to be his own happiness and wishes. (Respectively, for someone of severely diminished intellectual capacity, what he would have wished for had he been able to make a qualified judgement. It is far from a given, however, that the care-taker is the best replacement judge.) 3. Given that someone is genuinely unhappy, it does not automatically follow that he is the one who must be changed. Often there is simply a mismatch with the environment, and the environment might be the better thing to change.

        o As for the general issue of a cure, I note that the discussions of cures I have seen so far have seldom left the decision to the autist, but to the parents or the physicians—often at a stage very even a future high-function autist/aspie would have been unable to at all form or express an own opinion. The involved ethical and medical dilemmas must not be reduced to a simplistic “He would be better off if we cure him.”.

  43. lpjo October 11, 2010 at 2:55 pm #

    I’ve been told that my child cannot be on the autistic spectrum as she has an imagination. I wondered if you had any comment on that?

    • Joanne Houldsworth October 11, 2010 at 3:14 pm #

      lpjo – I can’t speak about your daughter, of course, but I can say that my son Gregory has a fantastic imagination. It is different than that of my other kids though. He seems to need a concrete starting point and then he’ll jump off from that. For example, he recently starting watching the kids’ game show called Brain Surge. He loves it and now creates entire ‘episodes’ of his own. He is extremely detailed with it, writing exact dialogue, coming up with questions, etc.

      And the other day my daughter (aged 7) wanted to play school, so Greg and I played as ‘students’ with her as the teacher. Gregory played his imaginary role very well and we all had a fun experience.

      So, I would have to disagree with the Dr., unless he has another or more specific definition of imagination.

      Good luck with your journey!

  44. mietwagen mallorca October 12, 2010 at 10:22 pm #

    It took me a while to search on the web, only your site explain the fully details, bookmarked and thanks again.

    – Laura

  45. julie November 27, 2010 at 3:16 pm #

    It was funny when i read this article my son has just been diagnosed and we are starting different therapies. the first thing we said is that we don’t want to change him. My Boy is MY boy and i love him. even when discussing some of his eccentricities i call them MY BOY because that is who he is.
    So i agree with the teacher if genetic therapy could bring them further along the spectrum with out “fixing them” to make living skills easier then yes but if it them made them normal NO!.
    I take pride that my son is not a sheep. he doesn’t just go along for the ride.

Trackbacks/Pingbacks

  1. Twitted by houldsworth1 - September 28, 2010

    [...] This post was Twitted by houldsworth1 [...]

  2. Twitted by asdhelper - September 28, 2010

    [...] This post was Twitted by asdhelper [...]

  3. Stem Cell » Blog Archive » Fix Autism? « Aspergers : A Mom's Eye View - September 28, 2010

    [...] Read the original: Fix Autism? « Aspergers : A Mom's Eye View [...]

  4. Fix Autism - September 30, 2010

    [...] Autism September 30th, 2010 | Author: wpuser Fix Autism? « Aspergers : A Mom’s Eye View If we could fix Autism, would we? I recently attended a conference where a geneticist presented [...]

  5. genetherapy.bz » Blog Archive » Fix Autism? « Aspergers : A Mom's Eye View - October 1, 2010

    [...] Continue reading here: Fix Autism? « Aspergers : A Mom's Eye View [...]

  6. genetherapy.bz » Blog Archive » Fix Autism? « Aspergers : A Mom's Eye View - October 1, 2010

    [...] See the article here: Fix Autism? « Aspergers : A Mom's Eye View [...]

  7. Fix Autism? (via Aspergers : A Mom’s Eye View) | Allodoxaphobic's Blog - October 1, 2010

    [...] If we could fix Autism, would we?  I recently attended a conference where a geneticist presented some very exciting advances in current autism research – leading to just that possibility.  Dr. Alexander Kolevzon, from the Seaver Autism Center at Mount Sinai School of Medicine, stated that scientists have identified the gene responsible for Fragile X Syndrome (FXS) – a rare genetic variation which accounts for about 2% of autistic cases[1].  Fragi … Read More [...]

  8. Early Symptoms Of Autism – How To Recognize Early Signs Of Autism - October 4, 2010

    [...] …Six symptoms of autismWhy My Child With Autism Is Fully Vaccinated | Shot of PreventionFix Autism? Aspergers : A Mom's Eye ViewCauses Of Autism Definition, Diagnoses, and SymptomsEducation Services for Children With Autism [...]

  9. social-hq.com - October 4, 2010

    Newton’s Apple: A Kid’s Eye-View Into the World of Science (Mummies, Bicycles, Tigers, Helium Chat, Owls, Sports Clinic, Radioactivity, Acne Chat)…

    I found your entry interesting thus I’ve added a Trackback to it on my weblog :)…

  10. His Name is Khan « Terrell Mims's Blog - October 18, 2010

    [...] For more information on Asperger’s Syndrome, go to this blog. [...]

  11. Tuesday Thoughts: My Name is Khan Review « Terrell Mims University - August 16, 2011

    [...] For more information on Asperger’s Syndrome, go to this blog. [...]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 171 other followers

%d bloggers like this: