Posted by: debstake | March 17, 2012

What I HATE About Autism


  My hatred isn’t for autism anymore. I have come to peace with autism a long time ago. My hatred of autism stems from the “snake-oil” salesmen who are making a killing on parent’s desperate need to “fix” their children. I remember those days myself and I hated the fact that we couldn’t afford the “latest-greatest” treatment to save JR. We couldn’t afford the DAN doctors because most refuse to accept insurance. Insurance would never authorize charges of $600 per hour and no thinking intelligent individual who says they care and want to help would ever charge that amount either. Or so you would think, but alas there are many “DAN” doctors who do that very thing. I know of only one doctor in Pennsylvania who is DAN certified that also takes insurance as payment in full. He to has a son on spectrum who he believes was injured by his vaccines. I wonder if that has something to do with it? Possibly, but then again there are other DAN’s who also have children on spectrum and who also believe vaccines contributed to their child’s autism who don’t take any insurance and charge obscene amounts of money. So maybe the doctor who does accept the insurance is truly in it to HELP our kids. What a novel approach!!

Then of course no treatments (except MB12 shots) have ever been covered by insurance, even if you get the doctor to write a script for the alternative treatment. Insurance companies caught on to that one pretty quick. We have had JR on supplements of varying cost for the past 8 years solid and everyone we have paid for out of our pocket. The MB12 shots are the only thing our insurance (Aetna at the time) ever paid for. And the MB12 shots were (after 18 months of administering them) not living up to their hype either. Most of the supplements were beneficial though, for a time but since JR has hit puberty we have been able to dial back at least 25% of these supplements. And I believe another over haul will be done by his 15th birthday this September. Maturity has helped improve his autism greatly. That plus his educational setting plus the supplements we have done in the past have led him to the point now where we can discontinue the use of some of these supplements.

And of course insurance won’t pay for most other alternative treatments because they aren’t FDA approved for the treatment of autism. A perfect example of this is hyperbaric oxygen therapy. All though approved for many things, rapid wound healing being but one; HBOT is not approved for the treatment of autism. And it’s not FDA approved because big PHARMA doesn’t want it approved. PHARMA believes that the only thing that should be used for our children are their products. You know the drugs that cause suicide and homicidal tendencies in a good percentage of individuals. I often tell people PHARMA got their bite at the apple, in the form of vaccinations. They won’t get another.

I know I am going to get flack from parents who are still desperate and from the “snake-oil” salesmen who make their fortunes because of these desperate parents, but that’s to bad. I am not a neurodiversity nut job either so please don’t accuse me of being one. IF a child is sick with gut issues (which is what causes all the other issues including neurological) then I firmly believe in treating that child. I firmly believe in bettering that child’s life and I don’t believe in “just accepting” the hand that your dealt. If a child is in physical pain they are incapable of learning PERIOD. If they can’t learn then no educational setting no matter how good it is will do much good. The body MUST be healed first. What I am saying is that you don’t have to buy into the thinking that it’s all or nothing. Many supplements are made that are not autism specific that can be of great benefit for our children.

So far what I have discussed is the medical side of autism. However, what really prompted me to even write this article is the iAdapter protective case for the iPad2 that is sold by AMDi. It can be seen HERE. This case is marketed as such “The iAdapter 2 is a fully rubberized housing that is designed to protect your iPad2 from damage and everyday usage.” My son got this case along with his iPad about 2.5 months ago. The case is coming apart with the pins where the screws go into snapping off. The bottom corner of the case has snapped off now too. I wrote a review of this case over the weekend which I fully do NOT expect the AMDi company to put on their website. That is why I posted it to my Facebook account and am including it here in this blog. This is what I wrote:

I am the mother of a 14 year old son who has autism and is non-verbal. My school district purchased an iPad2 and an iAdapter case for his use. My son has had these items for a little over 2 months now. To say I am EXTREMELY disappointed in the iAdapter (especially for what it costs) would be the understatement of the week!! The overall construction is very disappointing as the speakers inside the case have no protective housing and the wires are exposed under the iPad itself. But the worst is the fact that this case is marketed for the special needs community (by virtue of it being sold on your site, where other products are marketed for special needs individuals) and it simply does NOT stand up. My son occassionally DROPS not throws but drops the unit and the posts inside the case that the screws are screwed into are snapping off from these occasional drops. Within the first 8 days of it being in our possession the charging cable quit working all together. But the most disappointing thing is its overall construction. I guess one can’t expect much from products made in China!!!! 

This review is on my Facebook page now and I will be writing a blog post on it as well. I am SICK & TIRED of companies marketing things for the special needs community so they can gouge the buyer and then the item does not stand up to the special needs individual anyway. If I could give this a negative rating I would certainly do so!!!

This is another perfect example of a company taking advantage of those least able to afford it by marketing their wares with a special needs label and charging outrageous ($265.00 for the case I mentioned above) amounts of money for things that do not live up to their claims. This company reminds of the folks at Dynavox.

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Responses

  1. This is very attention-grabbing, You’re an excessively skilled blogger. I have joined your feed and look ahead to searching for more of your magnificent post. Additionally, I’ve shared your site in my social networks

  2. Hi, saw your post on P2G forum. My son has the ipad encased in the Otterbox – “Defender Series” – Its lived up to all its claims. Also about 6 months ago we went to the Childrens ER and they had their ipads also encased in the same case.

  3. By the way, my oldest son took part in the Autism Project run by the University of Pittsburgh. Did you enroll your son in that study?

  4. No I didn’t. With the crazy way our political leaders are behaving I am keeping my children (especially my son) below the radar. Think Nazi Germany, extermination camps, disabled individuals.

  5. I understand how you feel. Most equipment for the special needs community is ridiculously overpriced. Often Medicare will pay for all this stuff, but private insurance companies will not (regardless of diagnosis), this jacks up the prices. Not only communicators, but wheelchairs, walkers and all sorts of equipment are all way overpriced, particularly child sized things (eventually you learn not to buy these things and that you do not really need them). We have not been able to get onto Medicaid – once he is 18 he will qualify I hope because the medical bills are killing us.

    The Autism community is somewhat at fault here too, because they will not be critical of anything! These “snakeoil” solutions are all touted on the internet, often by parents themselves and sold as the panacea..NOT. Everyone is looking for a quick fix, any fix – there is none. Our kids are not broken, just different. They will never be what society, the school system and some parents want, they are delightful and different and zany. They take a lot of hard work, understanding and common sense to raise, but it is worth it . No two kids respond to the same things. As you pointed out – as our kids grow and mature they do much better. Most of them are quite bright and as/if they develop insight into their condition, they are better able to deal with the world on their own terms. My oldest son is going to be a Senior next year and is doing extremely well – with the exception of his social skills – which need a LOT of help.

    We are looking to go to an IPAD for our nonverbal handicapped son, after our DynavoxV stopped working, and the school was told it will cost $700 to fix. We have had the DynavoxV for many years and it was ridiculously expensive ($8,000) – we received a grant to pay for it. It worked quite well and of course was bulletproof!!! But it is heavy, slow and the touch screen technology is way out of date.

    I was going to look for a protective case for the IPAD, as my son is really rough on equipment due to coordination issues, but after reading your post, I know which case to avoid, because I know that this unit will land on the floor frequently. I will be looking at a number of different options, and maybe my husband can design something that will work (he’s an engineer and over the years has modified and made things for our son when things were too expensive or not available).

    How well do the apps do the job on the IPAD?

  6. Katja,
    The iPad is fantastic. The apps are very good as well. I wrote a blog post sometime back comparing the iPad to the Dynavox. Within that article are some links for apps that are good for our kids. My son’s apps are fun and educational in their roots. BTW when your son turns 18 he will qualify as your income is no longer taken into consideration. He should also qualify for SSDI as well.

  7. Thanks. I will be looking forward to working with the IPAD – I still have some reservation on the durability of the IPAD and we will have to teach him to be more gentle with the touch screen! He is so used to poking the Dynavox really hard!

  8. Katja,
    If your son doesn’t have any PICA issues (eating non-ediables) then I would strongly recommend the Otterbox Defender case. It is made of a plastic that the iPad slips in and that is wrapped in a silocone frame. The case also has a cover for the screen while it is being transported that doubles as an easel when the iPad is being used. Go to amazon to get it though. Otterbox charges $90 for the case. If you watch u can it get on amazon for about half that. HERE is a link to some of merchants selling it on amazon.

  9. Thank you – much cheaper on Amazon! My daughter had mentioned the Otterbox to me apparently they have them at school. He doesn’t like to eat at all – so this is a good solution for him. I think we will tell the school not to fix the Dynavox and get the IPAD instead! Thank you so much for your input!

  10. You are most welcome Katja. God bless you and yours.


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