Proceeding with Caution…

Last night, I watched a program called Decoding Autism, put out by New Jersey PBS and, apparently Autism Speaks.  You can actually watch it online here. This program is not new.  You might have seen and discussed it already but I only just saw it for the first time.  It left me feeling sad and disappointed until I found something that made me hopeful in the end.

Perhaps, my mood is all a part of the acceptance process.  Maybe, I have not yet completed acceptance in relation to my son’s autism diagnosis because of the desire to find alternative treatments for his autism.  I’m not saying I am not happy with ABA – I know it to be the best thing to have happened to my son.  However, I want every possible available treatment for him.

In any event, this program did not leave me with a sense of hope.  It left me wondering what to do, where to focus, and whether there is anything more to hope for. The program, as the title indicates was to find the the way to “decode” autism in order to work “toward a cure”.  Let me start out by saying that I understand the division within the autistic community between those who want people to quit looking for a cure and instead work to encourage neurodiversity and those longing to finding a cure.  I respect the rights of all individuals to choose their own paths.  My path right now is to lessen the adverse neurological effect of autism on my son’s daily life.

That being said, I watched this program to see what opinions and information I could garner from it.  There were interviews across the United States from Children’s Hospital, the research facility for Harvard to UC Davis MIND Institute in Sacramento, very close to home for me.  The program gave opinions concerning what causes autism and the treatments people are using to try for a “cure”.

The program says the brains of autistic children are, on average, 5 percent more enlarged than those of neurotypicals (NTs).  The white matter is also enlarged by about 8 percent which, they say, means that there is too much wiring in the autistic brain. There is also a unique brain wave pattern that show fractions of a second delay in brain signaling in the autistic brain which together with the increased wiring shows that there is a brain connectivity issue going on.  That abnormal brain connection is located in the frontal and temporal lobes of the brain where language, social cognition and perception are contained.

What has been discovered to date is that there are many different causes of autism including that the immune systems of some autistic people make antibodies to one of the types of neurons in the the brain and some mothers produced antibodies to fetal brain tissue!   There are also believed to be several hundreds of genetic causes of autism.

When it got down to discussing the best treatments, the program said that there will probably be different types of recommendations for treatments depending upon the origination or cause of the autism.  The program made it clear that the only form of treatment that has shown empirical evidence of improvement is ABA.

The program says you cannot begin to fix a problem when you don’t know what went wrong in the first place.  That was the language that got to me.  I don’t know the origin of my son’s autism.  I don’t know what his genetic situation is.  I remember that our pediatrician and the hospital were trying to get me to have my son’s blood drawn for the genetic testing but I did not want to do it because I did not think it would make a difference to his treatment and no one I asked about it could give me any concrete reason why it might help him.

This program gave one “lumped up” example of a family that said they “cured” their son by using the multiple alternative treatments of B12 shots, gluten and casein free diet and hyperbaric oxygen treatment.  It spent about 60 seconds on the family.  We did not get to hear their son talk or respond to questions.  The entirety of the family’s existence was explained and then erased by stating that none of the treatments they used have been shown to work.  So what is the message there?

These parents said their son was basically nonverbal, underwent all these alternatives and said their son was now indistinguishable from an NT child.  Immediately thereafter, the program completely dismissed them without anything further than a disclaimer that every treatment the family used did not work.  What?  What does that mean for the rest of us?  That this family is a bunch of looneys?  That their son still has autism and they are wrong?  That their son never had autism?

The program talked about therapies for autism without endorsing any.  It talks about early intervention as the only hope and then gives the statistic that it helps only in 50 percent of cases.  It spoke of hope to start therapy as early as 6 months old for some children based on blood phenotyping and then shot down such intervention as implausible at that age.  I was left quite confused by it all.

It further talked about “Autism’s False Prophets” and the fact that desperate parents will spend lots of money for something which is not a cure.  I guess that’s where I fit because I want to try the HBOT to help my son.  Even though I hear about the charlatans, I want to make sure I do what is right for my son.  I will talk to his pediatrician and do further research on that subject but I am less hopeful that the benefits will outweigh the risks involved.

The one light I found in the information provided was a discussion of a therapy called Transcranial Magnetic Stimulation or TMS.  Transcranial magnetic stimulation (TMS) is a noninvasive method to cause depolarization or hyperpolarization in the neurons of the brain. TMS uses electromagnetic induction to induce weak electric currents using a rapidly changing magnetic field; this can cause activity in specific or general parts of the brain with minimal discomfort.

In looking online for more information on TMS, I found that John Elder Robison, an adult with Aspergers who was diagnosed at age 40, is involved in the study and blogged about it here He also discussed it on You Tube.  After about 2 minutes of introductory background, he talks about the TMS procedure as opening a whole new world:

So, now I have something else to investigate.  TMS sounds much less dangerous and has a very familiar and articulate face to attach to it.  Looks like I will be switching horses.  I don’t quite think I’m mid-stream however.

I welcome your input, as always as I seek ways to help my son.  Please let me know what you think.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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21 Responses to Proceeding with Caution…

  1. The funny thing with a disorder like autism is that its unique manifestation means that different treatments *can* work for different cases, but not always. Speaking from my own experience with a unique disorder (RA), I used to approach alternate treatments with more than a healthy dose of skepticism — until one of them worked for me.

    I’m not saying that I’m a believer in trying *everything,* but I guess I am agreeing that you need to have an open mind about treatments. Otherwise, you can miss something that might make all the difference. I wish you the best of luck if you do try TMS!

    • solodialogue says:

      Thank you Karla. I don’t know what to try other than ABA. I’m not saying that ABA is not working. Every mother knows that if there is something else that could help, could increase language or increase social cognition, we want that for our children. That is an expression of love. And I don’t want to tune out just because something is scientifically unproven if the risks are minimal and there is the potential it could help. It is a difficult choice to make for a child, especially when that child cannot express what he wants, nor could he possibly know at this age what the best choice is for him. That’s why I must be very careful and weigh all the information available, consult with people who know more, who share a different perspective. And hope to make the best choice for my son.

  2. Melissa says:

    I’m going to preface this by saying I’ve never seen the program. It sounds like it sort of lacked focus, though or a definite opinion. Or maybe they just didn’t want to offend any one group. A lot of contrary information in one show – oddly representative.

    I think that, yes, there is a division between folks. But there are many who are on the fence between neurodiversity, work toward a cure, not being sure that there IS one but … doing their best to function in a very NT world, or lessening the neurological effects of autism, and… something else maybe. You don’t have to be unhappy with one therapy to try another. At this point, I’m thinking of trying Music Therapy, maybe she’ll even LIKE that. And more OT. And something. Not because I’m unhappy with ABA or its results… but because it’s not the end all be all.

    The quote about ABA being the “only form of treatment that has shown empirical evidence of improvement”… I don’t think they take into account a few things. First and foremost, often ABA is going on concurrent with other therapies. And school. Take away one and others falter. I’ve witnessed this firsthand as they began tweaking my daughter’s OT schedule down to 1…. Just 1. Aside from that, I firmly believe that the pairing of teacher to student matters. Not to mention natural development AND when you start ABA to begin with. My daughter actually didn’t start ABA to begin with, she started with a regular SEIT, it took a while just to get her used to the routine. By the time ABA started, I think she was ready for it. Has she done WELL with it? Yes, absolutely. Would she have done well with something else? Possibly.

    Regarding head size? I’ve heard that before. My daughter is big for her age, her head is bigger. Being as how there is about 93% of the brain that humans as a species don’t use… I’m less than inclined to do anything more than buy bigger shirts for my daughter. Seriously.

    I think, at this point, I’m leaning toward genetic tendencies for my daughter’s diagnosis. I see many of her qualities not only in myself and my husband, but going way up the line in other family members. The only differences are a) severity b) when she was born (there are several who would have received services if they were born in this decade) c) acceptance d) early intervention.

    • solodialogue says:

      Hi Melissa. Thank you for reading and commenting here. I think the show was really geared toward the one goal of “finding a cure” which is the Autism Speaks mantra. I’m not against what Autism Speaks seeks to do. I do believe that this program, like others, had an agenda and that was to push what is proven and to spend very little time with what’s not. I’m not saying that is a wrong choice. In fact, it is the most conservative because it lessens the risk of desperate parents seeking interventions that may turn out to do absolutely nothing but cost the family money and time with no results.

      I’m with you that you do not have to sacrifice one therapy to start another. I would never dream of giving up my ABA which is absolutely the best thing that has happened to my son regardless of speech, social skills and OT. Behavioral therapy gets results. Why then, am I driven to seek more for my son? I think it is just who I am. I want to feel I’ve done everything I can for him out of love. Music therapy sounds good as well. There most certainly can be no harm from such therapy.

      As to head size, my son’s head is also big – so is his dad’s (in more ways than one!) I also buy shirts with big holes and with buttons that go far enough down that the shirt is easy to pull over the head.

      I know that you are right that many people did go undiagnosed in earlier decades and would have otherwise qualified for services that our children receive now. Does this mean that we should not worry so much? Maybe. I don’t think there is a right or wrong answer.

  3. Jen says:

    I think all the time about what more I could be doing for Katie. We are so strapped just paying for the evidence-based therapies at this point, that I haven’t really been able to devote much thought to the “woo”. I would like to, heck I’ll try anything (safe, no chelation here), and I hate the thought of looking back someday and wondering if I truly did everything I could.

    • solodialogue says:

      Jen, I see what a wonderful, caring mom you are all the time. Sticking with the evidence-based therapies is probably the smartest thing to do. I haven’t spent any money yet. I’m exploring. I will figure out what is safest and best first. The money part comes later. So far, I think I’m striking out because I have found only options which involve risk without proven benefits. Perhaps with the TMS, there is a low enough risk with more possibility of reward to try. But that involves more research. And even then, where to turn? I have no idea. More study, more sharing and more asking for opinions from all of you. Because, like you I hate the thought of looking back and wondering if I truly did everything I could.

  4. Teresa says:

    The challenges we parents face. There are still so many unknowns when it comes to treating our children with special needs. Friends and family want to help and send information about a new development or product that helped a specific child. When I hear about a miracle cure I often wonder if the child maybe was misdiagnosed… For example: A story the other day on the news talked about a nonverbal child who suddenly started talking. Maybe he just had a severe food allergy/intollerance causing a terrible brain fog and now that the offending food is removed he is well. We can’t know. Especially, when the story tells about just one child’s cure.

    Through our personal years of research, there does seem to be truth that there is a genetic component; that many children have gut/bowel related issues where proteins sneak into the bloodstream; and especially autistic children have issues with brain wiring.

    Over the years our family has tried things, some big and some small, including: mega vitamins, diet, horse and dolphin therapy, brain mapping, patterning, oxygen therapy, and more. Many programs we tried had visible success. With patterning Matthew no longer needed to wear bifocals. Diet changes (lactose, gluten free) and oxygen/breathing therapy, took a child from being sickly all the time to wellness. When we did brain mapping suddenly Matthew could do puzzles.

    Things we tried were generally above board and had scientific backing. I remember reading about a physician mom who injected her son with a product (a smooth muscle relaxer, thought to have helped some children) but the state chose to prosecute her for malpractice. I also have a friend who has used chiropractic treatments and tried chelation and feels they were somewhat successful. Still, it’s tough to know where to draw the line. As with any illness or problem, the more publicity it gets the more opportunists try to take advantage of those hurting.

    There are many very honorable doctors and specialists looking for the best treatment options. Our family has found the most comfort talking to physicians who also have children with autism. We know they are also looking for the best and safest outcome. Bernard Rimland (maybe by now retired) has done a great amount of research and is in the San Diego area (I think it was Dr. Rimland who started the Defeat Autism Now physician listing.) We also have visited Cindy Schneider in Phoenix who has two autistic children.

    Our advice, try what you think might be helpful, keep an open mind to new ideas, and research new programs before jumping in. Best wishes for great success!

    • solodialogue says:

      Teresa, you are so wonderful to share your insights here with everyone. It is greatly appreciated. Some of the options you discuss are things I have not heard of including brain mapping and patterning. It sounds like much of it was helpful. Was it of a permanent nature? Do you think it coincided with natural development?

      I agree that the difficulty is in drawing the line. Not only because others may seek to take advantage, but because of the risks versus the rewards. I am certain that speaking with physicians who have children with autism would be the best. However, I do not know any. Dr. RImland, if still in practice is far away from where I live. I think your advice is good and simple. Thank you.

  5. Rachel says:

    Again, I think it’s always best to take any claims of anyone having found the “causes” of autism with a grain of salt. What you’re talking about in this post is correlation — larger brain sizes, more neural pathways — but no one has shown that these things cause autism. And trust me, if I do have more neural pathways than NTs, the benefits at least equal the challenges. Who would I be without all that sensitivity? All that musical talent? All that ability to feel for other people? Do I really want to give up the best of who I am so that my hearing improves? Or so I can make small talk in noisy rooms? Or better eye contact? I don’t. You learn to adapt with a disability. You really do. People have been doing it since forever. And the main barriers to our participation in life have nothing to do with disability, but with the social and physical impediments placed in our way.

    Please try to remember that there is a lot of fear and hysteria whipped up by doctors and researchers right now about the necessity of doing all these treatments for your kid or else disaster will strike and your kid’s life will be hopeless. Yes, you do what you can — ABA, Floortime, OT, other proven treatments — but please, don’t beat the crap out of yourself about chasing down every single solitary lead because you think that you’re failing your son if you don’t. There has to be time and space here for you to just be a mom, and for your kid to just be a kid.

    I was — and am — high functioning and I never had any therapy as a child at all. Would I have liked some? Sure. It would have been great to have someone at least try to understand what was going on with me, ameliorate some of the difficulties, and help me handle the rest. What would have sucked completely, though, is having anyone communicate the fear that my life was going to go to hell in a handbasket without the latest treatments, and that’s a fear that far too many autism parents live with unnecessarily. If my parents had taken that stance, it would have made me more anxious than I already was, and it would have had a serious impact on my self-esteem. There’s a balance here that’s really important to your son’s sense of himself. He will always be autistic, and his ability to live with it sanely and safely depends as much upon him feeling a sense of faith in his own strength and his own life as it does on what treatments you choose. Maybe more so.

    I wish that more doctors would wake up to the fact that we autistics have always been here, and that lots of us have lives that are far from disasters. But of course, then they wouldn’t be our great saviors.

    • Melissa says:

      Thank you, Rachel. You’ve helped me a lot today.

      • Rachel says:

        I’m so glad, Melissa. Thank you so much for letting me know! Helping people is what I love to do most, and it’s especially important to me to build bridges with parents of autistic kids. Please come by my blog anytime!

    • solodialogue says:

      Rachel, you truly have been wonderful for me of late. It’s like you’ve been steered here to guide me. It’s so weird. I feel like you that the greater brain size, the greater neural pathways can be a gift. But with it comes the difficulty. The sensory depth that NTs don’t feel. My son is so young and still so far from able to communicate what is happening inside his head to me that I often feel helpless when his language fails him and he gives up quietly or goes into a raging meltdown. These could just be the formative years that are more difficult because of the fact that he is learning how to deal in ways no one can teach but that he must discover for himself. But, I’m so at a loss to have any idea who this little boy will be when he is older. How much help will he need? Is he truly high functioning as all the therapists tell me? Will he continue to increase his ability to communicate or will he remain at this child-like level for another decade and then some?

      It is utterly impossible for me to sit by and let life pass with ABA recommended therapy, speech and OT. It is simply not in my nature. Although I have written a lot about it here, it is because here, I have you and everyone else who faces this diagnosis here, most days to give me perspective. I am just a mom to my beautiful boy most of the day. When it gets to be night and he goes to bed is when these thoughts are discussed on paper.

      One thing that I understand is that while many people experience autism similarly, every case is unique and individual just as you are and I am. You are an exceptional person, Rachel. Not many people I know are nearly as smart or educated as you are, including me. Yes, I have a post graduate degree but with autism? I’m just a mom trying to do right by her child. I understand that the questions for you are resolved and that you are beautiful and view your disability with what appears to me to be grace and elegance. What I deal with is a nearly 5 year old boy who still poops his pants and makes no effort to use a toilet. A boy who retreats into a different world with repetitive thoughts and talk, who engages in response reversal and who appears to confuse yes and no daily. Yes, he can read. He can spell beyond his age. I can spell a word aloud and he can tell me what it is. But he cannot pull his pants up all the way. He cannot fasten his seat belt with bulky clothes on, he will completely meltdown if he drops something in the car, he hates to brush his teeth, cannot wash and dry his hands without getting lost in the process, and he does not use utensils to eat.

      Maybe all these things will be things he grows out of when he is older but who can tell me this for certain? Who can say he will live in my world instead of the other world he falls back to like someone who is talking in their sleep? These things scare me. I cannot sit in that fear where I am and say it is a question of whether I should let him be or try desperately to find something to improve his circumstances.

      I understand about social and physical impediments placed in the way. I really do. Loud noises, too many people, long lines, ugly stares, unkind comments, social isolation – I have experienced them all and many more with my child. My child is beautiful and gifted in many ways. He is completely and utterly behind and unskilled in others. I want to help him. I know I will run into dead ends and I need you and all the beautiful wonderful people who come to turn me around when I do.

      I never ever tell my son that he is anything less than perfect. I do let him know we don’t poop our pants and we use the toilet. You see me here – talking about treatments and possibilities. You do not see me playing Spongebob pinball or reading The Very Sleepy Sloth for the 5th time before bed or building the marble runs, coloring Thomas the Train or playing tickling games or riding his bike while I run next to him. That is our life. This blog here is my solo-dialogue. It’s what makes me think and learn and grow as a mom, as my own autism expert. If I don’t write and talk about it, I will spring leaks and bust apart. We play. I write. I research. I hope for his future. But I will not stand by and be ignorant of what possibilities are out there. I will not forego a treatment if it has low risk and could mean I could help him understand so much more of the world around him. If he suffers some self-esteem because he thinks I did not accept him as who he is – then he can’t really see me for who I am. But I don’t think that will happen – he already knows how much I love and adore and think of him. Even if he did not, I’m willing to pay the price. That is just who I am and how I love.

      • Rachel says:

        Hi Karen,

        I want you to be very careful in your assumptions about me — not because I take them personally, but because they may be creating some distortions in your thinking, and that what you want is clarity. That’s why you’re writing about all these issues.

        I do not think of myself as particularly exceptional, but maybe that’s because I’ve always been different from other people, and so don’t tend to compare myself against them — except, unfortunately, in terms of what they are able to do out in the world and I cannot. Then I compare away and become very aware that, for all my intelligence and sensitivity, I can’t navigate the social intricacies that would allow me to have some high-powered job or engage in face-to-face community work. I try not to go there, because it keeps me from seeing that people tend to think quite well of me and that I do things of great value — just not in the conventional ways I once dreamed about.

        As for dealing with my disability with grace and elegance — well, no. My life is just as messy a business as anyone else’s. I’ve discovered and developed some frameworks for understanding my life so that I can see the prejudices and insanities of the world for what they are, but so have a lot of other disabled people, and there is nothing really exceptional about that. It only seems exceptional when you first encounter it, because we’re usually not allowed into the mainstream discourse.

        Please always remember that I am almost 53, which is a long, long way from being 5. You didn’t know me as a child, and if you’d seen me then, I’m not sure that you’d have seen me as very much different from your son. I once saw a photo of myself at 2 years old in which I looked like a typical, happy engaged child; I remember thinking, “Who is that?” Then there is a home movie of me at 3, in which I’m sitting in a circle of kids, completely unengaged, looking like a ghost of my former self — overwhelmed, unhappy, and lost. When I saw that movie, I recognized that kid right away. That was the me I knew, not the happy little carefree girl. Something had clearly happened — perhaps my sensory sensitivities had caught up with me, perhaps I had begun to realize my difference, perhaps the autism had simply intensified in some way — I’m not sure. But I do remember that I never initiated play with another child until I was 6 or 7, and even then, it consisted solely of riding bicycles around the block and riding down inclines to see how fast we could go. I was unbearably shy, and the only reason I hid my oddities better than your son is that I was a girl in the early ’60s and did what was expected of me, which was to smile and look pretty and keep my mouth shut. Autistic girls tend to do a lot of observing of the social world, and I was no exception.

        There are a lot of autistic kids who have even greater challenges than your son who were helped in an era in which ABA, Floortime, OT, and speech therapy were the only available treatments. There are people who didn’t speak at all until they were 5 who are now going to college; there are people who still don’t speak and are going to places like Oberlin and Whittier.

        No one knows the future, of course, and that’s always frightening. But I want you to be careful of seeing me as an exception; if you do, you’ll only increase your level of fear. I’d much rather that you saw me as an intelligent person, like your son, who may very well represent your son’s future. In fact, he may very well exceed anything I’ve been able to accomplish in my life. And please know that everything I’ve accomplished, and all the good that I’ve ever done, is because of my autism, not despite it. I would not have anything like my level of drive, empathy, and awareness without my disability. That much I know for sure.

      • solodialogue says:

        I do view you as exceptional because of your intelligence and sensitivity. You don’t find that everywhere you go (although I find it here with everyone who shares a comment with me). I glad that you are setting me straight about your childhood. It does help me to feel that my son could grow to be as wonderfully sensitive and articulate as you are. I simply must make the time to read more of your book which sits next to my bedside. I will get the chance as soon as the next couple of trials are completed by our office. Thank you Rachel. Your words are good for me and appreciated.

  6. Flannery says:

    This is a rather sticky topic.

    Like you, I constantly worry about doing as much as possible for my child. At the same time, I’m highly skeptical of a lot of the interventions being touted. I think all we can do is try different things to see what works for our kids. For us, ABA was a mix of some success and some worsening of behaviors. Social skills playgroup has been very helpful. Play therapy has been good. GFCF produced no changes at all. It’s really a gamble.

    Sometimes I feel like autism has become big business, and I think people are being taken advantage of with promises of “recovery” and dramatic results. I wish I could believe in magic results, but it has happened for us. I hope you have better luck, and I hope to hear more about the new interventions you try.

    • solodialogue says:

      Thanks, Flannery. Sometimes, I feel like a crazy mom. I know there are charlatans selling things to desperate people to cure something that science has not solved yet. On this journey, I will explore anything where the potential of benefit does not outweigh the risk, does not cost a ridiculous amount to try and is scientifically based, even if not proven. I don’t know exactly where this will take us but I will share it here.

  7. eof737 says:

    The good thing is that you are doing research and exploring your options. With time, you will have enough info to make the decisions you feel are best for your son.
    Keep the faith. 🙂
    E

  8. Sue says:

    Karen,
    You are an intelligent, educated woman who will do whatever you need to do to help your son. That is not a bad thing, but I would suggest paying attention to how your son reacts when and if you start alternate treatments as well as being sure you look at the research. Rachel is just trying to put that out there I believe.

    Honestly, as a nurse who sees the value of HBO for lung problems and skin healing, I am not sure how it would help with autism although I know some say it does. I am slightly skeptical. It certainly does not make sense to me that it would help with the sensory issues, but if you can afford it and your son tolerates it without distress, then you have to make the decision that is best for you and your family based on the best information you have.

    • solodialogue says:

      Thank you Sue. I appreciate everyone’s input. We all love our children fiercely and will do what we can for them. I appreciate Rachel’s words and references and perspective. I’m really unsure what path we will take at this point but after meeting with the pediatrician on Thursday, I’m hoping to feel on more solid ground whichever way that may be, even if it’s just a referral to another physician.

      I don’t know whether the HBOT will be the right path. I want to have a better understanding of risks versus benefit. Thank you for your kind words. 🙂

  9. Pingback: Look Before You Leap… | Solodialogue

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