Tuesday, July 20, 2010

Charlatans, Autism and the Reality of What Helps

There is nothing that gets me more upset than the charlatans that try to take advantage of autism families. Everyone of us knows the absolute terror you feel when your child is diagnosed with an autism spectrum disorder. For me it, of course, was mixed with relief that we finally understood what was going on with collegeman.

It took years because noone understood hyperlexia, and how collegeman as smart as he was, had a truly disabling underlying disability. The child himself used his hyperlexia to be able to make sense of the world that he couldn’t’ auditorily process and even tried to be outgoing and loved being around children his own age. Since he did not fit into the known definition of autism at the time, remember this is almost 20 years ago, no one really knew what to make of him, and those that did, the nursery schools that kept ejecting him, didn’t really care about him but about themselves. So yes it was a frightening relief to say the least. To this day I remember what the Committee on Special Education Director said to me, that collegeman was neither fish nor fowl. He never fit into an easy category, neither unchallenged nor neurotypical, but an anomaly in so many ways. A fighter in spirit and soul; it is his greatest strength and a terrific gift.

By the time HSB was growing up and starting to have the same autistic tendencies as his older brother we, being aware, had him in early intervention as soon as we could get the county to check him out. The sad thing is that the new pediatricians, we had moved to get collegeman his services, never told us about Early Intervention services in our county, which are terrific. I think they just didn’t know. But they have learned a lot about autism from me and the boys.

I actually learned about EI from some other parents in a Burger King one day. I heard them talking about their speech services and asked them about it. So HSB got EI since the age of 2 ½, while collegeman did wait until he was 5 ½. I know I need to stop beating myself up, but I suppose it’s what we always do as parents, it’s the “what if” syndrome. I think it’s normal and human and not really bad as long as it doesn’t bog you down in the present.

We all understand what it takes to get to the point where your children are recognizably diagnosed. We all understand that fear and worry and the questions of what do I do now? Well 15 years ago when collegeman was finally diagnosed everything was up in the air. Autism wasn’t big news yet. People were just beginning to notice a trend and in fact called it Silicon Valley syndrome because they said 1 in 4 children in that part of California had aspergers syndrome, but it really wasn’t even called that yet. Autism wasn’t truly thought of beyond the Rain Man stereotype and sadly in so many corners of the country/globe most people see autism only through that lens.

But in retrospect in many ways I think I had it easier than a lot of parents have it today. There were the basic meds, and therapies and educational supports that your child received. There were no arguments about treatments, organic, biomedical, psychiatric, and neurological. There was no argument and division in the autism community, because quite frankly there wasn’t an autism community just yet. There also was no internet, social media, support groups and chat rooms, which would have been nice. In many ways it was simpler but terribly less hopeful. I do know though, that even with all the controversies and divisions, I like what there is to offer in the way of hope and a future for our children so much better today than in yesteryear despite how much further we still have to go.

Yet, as I stated in the opening paragraph of this post, what I don’t like about today is the charlatan who does pray on the terrified family. I don’t like that there is a niche of people who promise miracles and in their desperation there are parents who will try anything to get help. I don’t fault the parents at all. I fault the leeches and you know who you are. There is no scientific and medical basis for any of these treatments and some of them can kill your child. (Don’t direct me to Age of Autism either. If you want to follow them you are welcome, but I think they are not only terribly inaccurate in their portrayal of autism therapies, I think they are downright vile towards those that disagree with them. Their attacks are personal, insulting and defamatory in many cases. If you cannot argue your case without ad hominem attacks you have no case to make in my book. If you would like a better review of their articles you can go to Countering Age of Autism listed in the sidebar.)

In the meantime, a wonderful new website just started called The Thinking Person’s Guide to Autism. It is a compilation of essays written by parents, doctors, autistics and therapists about who they are, what they do and how they approach the world. It is a terrific compilation of life in the autism community. Definitely bookmark this site and buy the book when it comes out. The profits go to real scientific autism research. None of the authors or editors keeps any money earned.

The latest article that I found on TPGA actually outlines the problems with these alternative therapies that many parents feel they need to try. It succinctly discusses the different protocols and explains the problems. It is something I hope that each and every one of you who is reading this post links to and takes the time to review.

In the meantime I would like to tell you what I did over the years for both of the boys, in addition to the supports supplied by the school. As I have always said, what the district does for our children is just a drop in the bucket of what they need to be able to be all that they can be.

1. Psychiatric and psychology visits: meds, play therapy, social skills, cognitive behavioral therapy, life skills coaching, classroom coaching (paras)for collegeman because he needed extra support with the transition into college

2. Speech therapy

3. Occupational Therapy: when that was done a lot of private sports lessons to keep up what was learned in OT (group lessons because of their disability didn’t go well)

4. Horseback riding lessons in lieu of horsetherapy

5. Etiquette lessons

6. Tutors because the underlying learning disabilities needed support after school

7. Creating an exercise regime

8. Making sure to eat mostly healthy, recognizable foods, i.e. things your great grandparents would recognize as food

9. Trying to eliminate as much as possible chemicals from the food stuffs; i.e. msg, red dye, preservatives, etc.

10. Drinking soy milk but we still kept cheese in the diet. We did not go dairy-free completely.

11. Adding in vitamins: multi-vitamins, B12, Omega 3 and probiotics (we use danactive)

No none of the things I listed are cheap by any means. But considering what some of these charlatans cost what I spent is nothing, or atleast these are therapies that accomplish something.
I have to say that the new regime we are going to try is gluten free. I had been contemplating it for awhile and I do know that the scientific studies done on gluten free shows that there is no great effect for children. However, none other than Dr. Temple Grandin, in answer to my question about anxiety, collegeman and independence during @thecoffeeklatch’s blogtalk radio show (here- the show was archived), told me that a gluten free diet really helped her. And she recommended it. So I figure it is harmless to try and may do some good.

I know that everyone is different and that everyone reacts differently to every environmental factor. But to me it is a shot worth taking. I think that since medication has not fully alleviated collegeman’s anxiety induced seizures maybe this is the jump start he needs. He is on board. At least maybe until he doesn’t get that gooey piece of chocolate cake he likes, but I did find a flourless chocolate cake that was just yummy and he liked it.

HSB, on the other hand, had a meltdown and is now angry at me for the change. But change comes hard for him for anything, never mind a change of diet. But we shall see. He has threatened not to eat any bread or pasta and I said fine. He then because I didn’t freak out threatened to not eat at all and I said fine too. I think that threw him. I just got an apology for his behavior. (See there are positives in everything.)If the most that comes out of this is that HSB recognizes that he needs to behave and react more appropriately to change than that in and of itself is going to be worth the effort. Incidentally, he liked the gluten free hamburger roll and just relented that he would have his pbj on that. (Yes, we use natural peanut butter.)

Meanwhile, I am giving the gluten free diet until school starts after Labor Day to see if there are any positive side effects or if it’s been a waste of time. I will let you know. But I am determined that this isn’t going to be a “what if” moment, it’s much better when it’s an “I tried it and it didn’t work moment.”

UPDATE: Please note that we switched from soy milk years ago because of the high levels of estrogen and the recent findings that it does inhibit male sexual development. I recommend organic dairy products of any kind, especially milk, and as an alternative, almond milk if your child needs a casein free diet. Personally I being lactose intolerant enjoy almond milk immensely, especially the original unsweetened variety.

Until next time,

Elise