Profiting from Autism

[BeckyScott]

Part discussion, part question.

Maybe it's because Justin is older, or I'm more "out there", or it just took everyone else a while to catch up, but I have noticed a trend lately. There have been several people approach me, people that I already know, "selling" stuff, be it products or some sort of therapy, to help with autism. Maybe you all have experienced this. Vitamin dealers, healthy home products, people who learned some new therapy technique in some other country. They have DVD's and literature. I guess autism is the new cash cow.

I am not opposed to trying different (read: not endorsed by the AAP) approaches with Justin, in my heart I believe that those alternative treatments will turn out to be the answer. But I don't want, and can't afford, to try every new idea somebody shows up with. Yes, even if they have literature.

At the same time, as I said, these are all people that I already know. Some better than others. And they seem sincere enough. And when you're dealing with a disability that has no exact known cause, it's hard to argue against something. And you kinda feel like if you don't try it, you're not trying hard enough to help your kid.

I sort of know what we're comfortable with at this point. We took Justin to a DAN, actually two different DANs. The first did not take any insurance (which is pretty typical) and while he was very knowledgable and started us on some stuff that did help, the bottom line is that we couldn't afford hundreds of dollars and a 2-hour drive one way to go see this guy all the time. The second DAN did take insurance, but also a 2-hour drive, and wanted all the labs re-done. The labs we still owe almost $1000 from the first round. So even the things that I see helping, because the DAN-type stuff I've tried on my own has helped, even the DANs are cutting some huge profit, as is the lab. Everyone is making their buck at the expense of parents desperate to find an answer.

It's like the whole universe finds out you have a kid with autism, and what they see are big dollar signs. Everyone has heard the stories, people selling their houses, cashing in their retirements, to pay for anything that will help their child. I hear that and it scares and saddens me. I guess others hear that and think if they can come up with the magical fix, they could be really really rich.

Some things, some products, like we use Kirkman vitamins, Kirkman has been around for a really long time so I tend to trust them more. But I have heard from two "friends", both of whom hawk two different vitamins on the side, about how great their products are. And both times I grabbed the Kirkman's vitamin bottle and told them, okay, this is what the vitamin needs to have (because if you've ever used Super NuThera you know the proportions of the vitamins are really bizarre compared to a typical multi-vitamin and I knew their vitamins weren't like that) and it needs to be a liquid or chewable... and the response I get is more information about their product and how many people it's helped.

Or, another example, we finally found an Omega 3 fish oil that Justin (both kids, actually) love, like lick-the-spoon love it, and I was pretty excited because we've tried 3 or 4 kinds and we had compliance issues and that's putting it nicely. When I told one person about this, cause I was very excited, the response was that she has a fish oil that is higher potency and would be better. UGH!

I can't spew facts off the top of my head like lots of the autism moms can do. I guess I don't have a science brain, and I'm going up against people that are well-versed in their spiel.

Bottom line, I don't want to totally piss off these people, because I don't know their motivation, I want to believe they're sincere since they know us personally, but maybe I'm just fooling myself. And it may be that some of what they're pushing is valid. But I don't know exactly how to get rid of them without causing bad feelings. And I don't know, maybe some of the stuff is valid and would be helpful.

Any suggestions for what to do? Do you all have this happen? The only thing I can think to do is ask if there are published studies of their product/ therapy? But they all have some, even though usually the study was done by the company itself. Do I just take everything offered and run it by the moms that I know online and see what they say? How do I get these people off my back? What if what they're hawking does have some legit value? As we speak, this morning, I have two vitamin pushers and one workshop pusher, and honestly the vitamins aren't right and the workshop we can't afford... But for various reasons, we need to maintain a friendly relationship with these people.

 

[bookwormde]

I think a lot of the issue is that people (mostly parents) are looking for a “cure” for something that is not a disease. There are really no studies that any particular therapy is broadly effective with lasting effects. This is not because there are not things that help with skills and cognitive ability be rather that neurotypical clinicians and scientists are unable to design studies that can effectively filter out sociological factors and expectations, these factors are so ingrained in neurotypicals that they can not even see them.

The other issue is that neurotypicals for the most part want to make spectrum individuals into neurotypicals (which is impossible) instead of embracing their neurodiversity and adapting societies expectations and supporting their special gifts.

As to the profit issue, this is really no different than the rest of the medical world, which is almost completely driven by insurance and the associated cash flow.

There are lots of clinicians out there who “mean well” but just lack the full understanding of the nature of autism spectrum neurodiversity.

bookwormde

 

[Cheshire Figment]

You both raise some very interesting points. One thing I would ask about related to surveys; that they are peer-reviewed and published in a journal that is not funded by the manufacturer. This will work to shoot down the manufacturer-funded (non-independent) studies.

 

[KirstenB]

Becky, I haven't experienced this yet, probably because Zoe is only 3. But, if someone was trying to sell me vitamins/supplements/therapies, whatever...I'd tell them I'll run it by Zoe's doctor and get back to them.

I'm not nearly as up to date on alternative treatments as I could be. I've read good things about the Omega fish oils, and have been meaning to try them out. My concern with some of this stuff, is I just don't want to cause any harm to Zoe, so I'm pretty cautious about it.

Having said that, Zoe also is only mildly on the spectrum. If she were more affected, I'd be pursuing alternative treatments MUCH more aggressively. BTW, from other message boards I look at, I totally agree that there does seem to be a lot of folks out there only too willing to separate us from our cash.

 

[BeckyScott]

bookworm, interesting points, as I've come to expect from you.

I think a lot of the issue is that people (mostly parents) are looking for a “cure” for something that is not a disease. There are really no studies that any particular therapy is broadly effective with lasting effects. This is not because there are not things that help with skills and cognitive ability be rather that neurotypical clinicians and scientists are unable to design studies that can effectively filter out sociological factors and expectations, these factors are so ingrained in neurotypicals that they can not even see them.

The other issue is that neurotypicals for the most part want to make spectrum individuals into neurotypicals (which is impossible) instead of embracing their neurodiversity and adapting societies expectations and supporting their special gifts.

I do agree with this. As I re-read my original post, hmm, I don't know that I'm looking for a cure, exactly, I mean that isn't the right word, I'm having trouble figuring out the exact right word. I think there are things that could help with some specific aspects. Okay, like for example, the fish oil, which is my new fave thing. To begin with, even neuro-typical people can benefit from it, so it's not specific to ASD. We're giving it to both kids, because I'm thinking it won't hurt the ADHD one to try too, and it's fairly well-regarded even by mainstream medicine. For Justin, and not saying it would do this for every child with autism 'cause we know that isn't right, but for him it drastically cut down his stimming. Now, the stimming is a manifestation of something else going on, so it's not that I think the fish oil "cured" the stimming, rather it provided his body with something it was lacking, and the stimming was a manifestation of something else that the fish oil somehow linked to. (like I said, science is not my strong suit, I'm learning as I go and really wish I'd paid more attention in high school)

It would be similar, I'd say, to having a typical child with vitamin deficiencies and then putting them on a really good multi-vitamin and noticing change. It isn't curing anything, it's providing something that the body needs but was lacking, so there might be a noticable change, but that isn't the same as a cure, and really isn't trying to fix something that isn't a disease. If that makes sense. I do agree with you, but I also feel strongly that Justin in particular has some major immunity problems, whether they are the cause of the autism or not, they are something I can do something about, because a Justin with autism and a healthy immune system is better than a Justin with autism and immunity problems. And therein lies the original problem. Because of course the vitamin hawkers and healthy home people and even the DANs put a lot of emphasis on immunity.

At any rate, it does seem that society in general does feel the need to "fix" autism, and it's a popular topic for those looking to make a buck.

As to the profit issue, this is really no different than the rest of the medical world, which is almost completely driven by insurance and the associated cash flow.

Which is true and very sad at the same time. It just seems lately it's become very trendy to somehow find a way to connect anything even remotely related to immunity, the environment, brain injury, special diets, metal detox, educational toys... you name it... to try to take a piece of the autism market. And it's unfortunate because many many parents will fall for it. Combined with that is the totally stinky state of our economy, which has put many companies in the position of being desperate to sell product.

There are lots of clinicians out there who “mean well” but just lack the full understanding of the nature of autism spectrum neurodiversity.

And I think that's a big part of the problem I'm having right now. The people I've encountered just don't "get it". They haven't been to Holland themselves, but they're giving travel pointers. Or maybe they've been to Holland, but just not the town we're in.

 

[alizesmom]

I think the friends approaching you are motivated by the wish to help. The problem is the manufacturers of the various products are jumping on the bandwagon and convincing your friends of the value of their product. The urge to do something/anything to help our children have a better/easier life is strong in all of us. You don't have to be looking for a cure, just that one little improvement whether it is physical, emotional or mental. The manufacturers know this and capitalize upon it. Cheshire has a good idea about peer-reviews. Karen

 

[bookwormde]

Yes what out children need is not much different from what would be ideal for all people, a well balance health regime which maximizes both cognitive and physical health, Mental stimulation and “exercise” appropriate for their style of processing, memory and interest and a healthy and appropriate environmental structure (both physical and societal/emotional).

With the increased demands of our “neuro make up”, due to our complex non linear system and the fact that societal systems are inherently (though not intentionally) discriminatory due to our lack of innate social imprint and neurotypical societal expectations, it is especially important for us to be at the top of our neurological/cognitive capabilities and as resilient to the stresses that an “alien” social structure places on us.

The good news is that we make a very good “test bed” for what works to improve these areas in all people, since even relatively minor improvements which would go undetected due to the innate social skills overlay in neurotypicals can be quite obvious and dramatic at all levels of the autism spectrum.

bookwormde

 

[TheZue]

I grew up with a mother who has multiple sclerosis. She tried ALL SORTS of non-traditional methods and it was only a fraction of it. She spent thousands having all her old fillings removed, hundreds a month on supplements, and yes she had friends recommending the "new" fix they found. None of it worked. Of course she could have convinced herself that the disease may have been worse had she not taken the supplements and such, but who knows? It's totally motivated by fear which is very valid with MS.

Anyways when my son was diagnosed I came from that background and I'm really skeptical of that whole side of things. We have limited funds to treat him with and with that in mind we've put it all in therapy because we KNOW that is getting results and I don't feel like a modern snake oil salesmen is taking advantage of me. Maybe some of the bio-med stuff works, but I'm just too jaded to put my faith in it and totally think there are a lot of people selling us placebos and taking advantage of our love for our kids.

 

[lucigo]

I am of the opinion that there are many different kinds of autism, and that what works for one child will most definitely not work for all ASD children. I have a very healthy child who has autism. He has never had to take antibiotics, or any other medicines for that matter. I do give him melatonin to help him sleep and a regular multivitamin with DHA. For the variety of autism that my DS5 has, what works for us is floortime and video modeling type stuff. When DS was first diagnosed I did the google education considered many therapies, and went to seminars on the different types of things available.

What it comes down to is that we do not know the root cause of autism, and therefore any treatment we do is only going to be to treat symptoms, not to treat the autism itself. For example, if you have a brain tumor and you get a headache, a tylenol might take the headache away but the tumor would still be there. That said, you might feel better without the pain...

Anyway, you as the parent are your child's best advocate, and only you know what is best for your child. Just because you don't try every new therapy that comes on the shelf does NOT make you a bad parent.

There is a huge pressure put on parents of autistic children for "early intervention". We are told we must have our children diagnosed and treated early for best results. I know in my case my son was diagnosed around 18 months, so we started speech, OT, play therapy etc, but I constantly felt pressure to find something else, and wondered if I was doing everything I could possibly do for my child. It felt like a ticking time bomb. I finally came to an acceptance that I am comfortable with what we have chosen, and an acceptance in my child's autism. I'm very proud of the progress he has made and am looking forward to the challenges we will face in the future.

As to what I would say to a friend who wanted to push a new therapy that I didn't felt comfortable trying, I would just say I appreciate your help, and I will look into it and make a decision based on what I think is best for my child. I respect your opinion and I hope you will respect mine.

 

[BeckyScott]

lucigo, Justin was also in early intervention at 18 months. He hit some major milestones during that time. I don't know what would have happened if we wouldn't have known, had waited for later. It's tough to say, because the milestones he hit were big ones, what I guess I'd call "the basics", and now his therapy is more fine-tuning. Early intervention got him the basics of communication, now the emphasis is more on nuances and the pronunciation of specific letters. Early intervention got him past how to hold a pair of scissors, now the emphasis is on cutting on the line. Preschool got him using the toilet, but we're still working on not peeing on the seat. So I think back at those years as the most important, but again they were also teaching the foundations so the changes were more noticable.

I don't know when, if, I'd ever stop trying new things. He makes progress but is always running at a delay because the typical kids his age are also making progress. But it's not that I'm looking to cure him. Now that he is able to communicate, do most basic living functions by himself or with minimal help... my focus has changed to the medical problems. The immunity, the eczema, the asthma. Trying to work through his huge issue with the dentist.

I guess my problem is that I wonder if some of the snake oil salesmen have something valid. There was a point, and still is, where DANs were viewed as total quacks. Some of them are. But some of the things they recommend do work, or at least did work for him. So I don't know who to believe. The idea of peer-reviewed studies is a great idea, something for me to bring up, a very good and simple test of validity.

I remember years ago, when Justin was still in early intervention, I got into a discussion with the OT about therapy toys and how she used many toys that she just bought at Wal-Mart because buying them from a specialty catalog cost 3 times as much. DH and I were at Wal-Mart and you could go down the aisle and make any toy into a therapy toy if you were creative. And that is the sort of thing that bothers me, like if you hop on ebay and do a search on "autism" there are all sorts of products that people are gearing for the autism market that really have little to do with autism.

 

[Forevryoung]

I remember years ago, when Justin was still in early intervention, I got into a discussion with the OT about therapy toys and how she used many toys that she just bought at Wal-Mart because buying them from a specialty catalog cost 3 times as much. DH and I were at Wal-Mart and you could go down the aisle and make any toy into a therapy toy if you were creative. And that is the sort of thing that bothers me, like if you hop on ebay and do a search on "autism" there are all sorts of products that people are gearing for the autism market that really have little to do with autism.

I'm a brand new speech therapist. I'm working with mainly preschoolers (and 2 toddlers receiving early intervention). I didn't have the money to spend on "therapy toys" so Marshall's and Target have stocked my supply.

My favorites include blocks, Cariboo (by Cranium), Zingo, and some great puzzles. I always have my eyes open for new toys on sale or on Craigslist.

I definitely agree that "therapy tools" are expensive when marketed as a therapy product. However, I can get the same results without spending the money. I think that that is the key- same results using a different product/direction.

There will always be "snake oil salesmen." I think it's a matter of trusting your gut, trying what is logical to you, and making the change when something doesn't produce the desired result.

 

[mechurchlady]

I agree with the cost because it is for something therapeutic can be rediculous. My pastor's wife made learning aids for an autistic kid and as well as others and usually from bits of wire, boards, paints and even PVC pipe. She had little money and thus worked hard to think of tools that would work.

I will tell someone about a product but it is up to them to choose to or not to use that product. I only recommend things if I know about the product. You will not here me taughting ginsing tea as I do not know if it works. I do know that the autism diet helps SOME kids but not ALL. Friends want to help but they also have to learn to not overwhelm someone with suggestions.

I HATE when people give me diet advice. They do not know about my celiac, joints, pains, back problems, mother, etc. I would love to walk 10 miles a day but shut up about that. Please do not tell me to stop eating as you better find me food as I am living day by day on junk food and one meal. I have snapped at so called friends with advice that cannot work.

I do however thank the friends who were there for support and little nudges. I hope you can get people to leave you alone. I hope you can get your friends to support you emotionally instead of offering advice that might not work. Definitely look at everything and see what you can use or make on your own. I looked at some expensive tapes for kids and found out what I was doing wrong with mom. The tape said to stop fighting and just say NO. Changed my life for free, lol , as it was from their demo. Instead of a stress ball I have a fuzzy die that fell under the desk and is far more relieving (SID quirk). Buying a $8.99 floor lamp changed my sleeping for the better and was way cheaper than a super deluxe lamp that would help me with my SID.

Big hugs and any time you want I will be here to give you hugs and chew on ankles if you want.

 

[lucigo]

I'm a brand new speech therapist. I'm working with mainly preschoolers (and 2 toddlers receiving early intervention). I didn't have the money to spend on "therapy toys" so Marshall's and Target have stocked my supply.

My favorites include blocks, Cariboo (by Cranium), Zingo, and some great puzzles. I always have my eyes open for new toys on sale or on Craigslist.

I definitely agree that "therapy tools" are expensive when marketed as a therapy product. However, I can get the same results without spending the money. I think that that is the key- same results using a different product/direction.

There will always be "snake oil salesmen." I think it's a matter of trusting your gut, trying what is logical to you, and making the change when something doesn't produce the desired result.

I totally agree, its amazing what you can get out of a kid with bubbles and plastic frogs LOL

 

[momejay]

I am a single mom of 2 children with autism. My children are now teens (sorta) I have already been through this battle. You find a diet that works & school can't provide for that diet. You get a doctor's note stating diet is necessary, so school puts them in a "allergy" class so he now can't have nuts. Well, nuts are one thing he can eat & everything he wants to eat contains nuts. Prepare for an uphill battle with everything! The battle never ends either. I am fighting for re-embursement for a necessary laptop for my 14 year old that was never taught how to write.

Diets & food diaries do work & they are the easiest change you can make! I took corn away from one child & she was able to be mainstreamed within a year. She is now in regular education classes, with modifications, for everything except Math. Our children's digestive systems don't work the same way most do. I would spend the most trying to figure out your child's digestive system. See a gastroenterologist that specializes in autism!

I fixed my son's digestive system & now instead of making arrangements for residential care, because he couldn't even behave in a class of one with a personal aide & teacher, he sits at a desk between 2 little girls & is in charge of feeding the class pet. He loves doing the laundry, making his own bed & I am no longer scrubbing food off the ceiling daily.

I have done things that I look back & wonder why I did that or why I spent that much money on a test I thought was crazy. I have sent urine samples to France. I have spend thousands on blood work & scans. Go to DAN doctor get his suggestions & take them to the doctor where insurance will cover & get them to write the script for that test, lab or the refferal for that specialist. If the insurance doctor doesn't want to write the script then switch doctors.

I do buy vitamins from Kirkman & have for years. I tried goji berries. I also use the fish oil. Teach them to swallow pills!!! They are cheaper! My son learned while on a prescription for a nasty tasting pill for a fungal infection.

Just use your best judgment. None of the best doctors take insurance. Use the insurance doctors for the annual physical & sick visits. Take the advice of a doctor you trust & take in everyone's information, read everything you can. Notice the reports that doctors & companies point to. See if the typical child in their report has any relivance to your child. I read one reguarding shots that used 12 month old children not even old enough to have a diagnosis for autism or the particular shot they were referring to.

Research every prescription. Know what it is for & what the side effects are. My son gained 45 lbs in a month on a drug that was supposed to control behavior. How did making him fat control his behavior? It didn't! He was 45 pounds heavier for me to wrestle with during a tantrum.

Know that sometimes a drug will have the reverse effect in our children's digestive system. My son had a toxic dose of a drug, a harmless allergy remedy, & was crazy. We went to the ER & it took 10 people to restrain him. What did they do? They gave him more of that drug & sent him home, claiming he was calmer. He was tired from the fighting not the drug. He spit that out in my hand after the nurse walked away.

You know your child best. Don't be afraid to speak up even if it offends a friend. Your child isn't a guinea pig & there is no money tree growing in the back yard.

 

[MinnieVanMom]

I remember when I knew something was not Ok with DS and then the DX. There was everyone and their brother with the new and proven cure for Autism. Yes a fool and their money will soon part!

So, I first sat down and took a month to cry and grieve. Then I started the research to find out what really had document proof that it worked. For me the answer was ABA. It documented how the child developed and improved. It wasn't me thinking he did something or wishing it. The answer was very simple + or -

We could not get any funding from the state program so we did make huge sacrafices to get ABA. We did intensive early intervention. Over 40 hours a week, 6 days a week for 2.5 years.

I hate when someone comes up to tell me that I don't discipline my child or what I am doing wrong. If they have a child with ADS then I will listen. Other than that, I find it offensive.

JMO.

 

[Angibaby]

*disclaimer I have only read about 1/2 the responses so far because I am tired but wanted to say a little something, sorry if something I say has already been said *

This is a GREAT topic and just because you aren't "good" at science doesnt mean you are any less knowledgeable than the folks who are hawking vitamins for a living. I will say since they know you they certainly are wanting to help you BUT if they are SELLING you something they also have another motive also. Even if they TRUELY believe in their product. From what I have seem of these type of people usually are kind of like a Mary Kay or Pampered Chef consultant only without the parties. They find people to buy the product, they make money, then if they also get you to believe in the product they can get you to sell the product too and they make money off your sales and their sales and if you can convince someone to sell they make money off them too. So they have to believe these products can help you otherwise how could they get so enthused about them. The problem is (as I see it anyway!) they were fed the info and the "science" behind these products by people trying to sell the product to them or to get them to sell the product. They choose to believe the "science". I am sure you have read some of these pamplets and whatnot they make it sound so logical. "see it has to work" and we will "show" you why. The people selling these products likely dont know anything more about the science behind this than what literature they were given to sell their products. Some very smart people put together the literature also, likely they were marketing people who put them together not scientists.

Personally I think YOU happen to be VERY smart in this because you are questioning and realizing that it is possible at least SOME of these things are going to be self serving to the people who are selling the product. I am not saying you shouldnt believe any of it but it is good to question. You can at least say to yourself " self, would company xxx give me lit. that shows me that their product is inferior in anyway to another product or even that their product is crap?" and able to answer yourself "self, nope I dont think they would do that". Some people dont do that and just buy, buy and buy some more. It is so hard to wade through all the crap that is thrown at you too. Esp. when it becomes emotional for you and anything concerning your kids is going to be emotional. No way around it. These hawkers play that up too, there is a possiblity they would do it to an extent to feel like you are a "bad parent" for not getting the product. That sucks. Because you only want to do what is best for your kid. The best thing you can do is try to seperate yourself from the emotion of it all when you are researching. No harm in taking the lit and telling them you need to take your time to discuss it with the MD and do that and even some of your own research also. You are happy with the supplements that they are currently on? Then tell your hawlking friends that you are sorry but what you are currently doing seems to have shown improvement in your child so you will stick with it until you decide it is no longer working. Just politely ask them to stop trying to sell to you. If they are offended then that is THEIR problem as long as you know you were not rude. Not everyone can like you anyways! LOL!

Your Op didnt say how old Justin is (and I am new 'round these parts so I dont know how old from the boards) but I think the thing with getting offered more often is because Autism is more "out there" than it ever was before. If he is a teen then when he was littlier you just didnt hear about Autism as much as you do now. Is it because of better ability to diagnosis it, more people actually have it or that we are just talking about it more? (I bet someone here knows this but since my kids dont have it i have never looked it up to find out) I know in my life growing up I cant recall ever knowing a person with Autism and the first I heard of it was Rainman. Seriously. Were there kids diagnosed with it and they were not "mainstreamed" or were they undiagnosed or is it more prevalent? Whatever the case may be it seems Autism is the "disorder of the month" so to say. It is everywhere. So "obviously" people want to "fix" them. And people are willing to do anything to help their kids. And there are people out there who KNOW that and they arent always the most honest people. Even if YOU know there is no cure they are hopeing they can at the minimum convince you that their product will help reduce his "suffering" and you will buy it. They are REALLY hoping that you will think it IS going to cure him and buy even MORE! In order to do that the get sales "consultants" who believe the info they have been read and told because your friend can sell you better than an infomorcial.

If you look back in history you will find that things like a regular asprin and cod liver oil "cured" everything. We know not it isnt the case. But these products arent useless for sure, they just arent the cure for everything.

The short of what I think I am saying here is that these things COULD work and you have found some that DO seem to help. GOOD. The best thing you can do for your kid is what you are doing. Keep reading and gaining knowledge. Discuss what you want to do with a MD who you trust (and hopefully isnt trying to sell you anything) and do what makes sense to you. I can tell you are a great Mom all the way through the internet cables!

 

[BeckyScott]

I have done things that I look back & wonder why I did that or why I spent that much money on a test I thought was crazy. I have sent urine samples to France. I have spend thousands on blood work & scans. Go to DAN doctor get his suggestions & take them to the doctor where insurance will cover & get them to write the script for that test, lab or the refferal for that specialist. If the insurance doctor doesn't want to write the script then switch doctors.

We are fortunate in that Justin (who, Angi, btw, is 8) has a regular ped that is willing to listen. Like our first DAN appt, the dr suggested a bunch of labs in his office (no insurance). Well we couldn't afford to go back to him, but I had heard from other moms about Great Plains Lab, and it seemed like a legit enough idea, I ran it by Justin's regular dr and she signed off on the labs instead. The insurance didn't cover most of them but it did cover a few, and we did save another trip to the DAN.

The second DAN wanted all the labs re-done, (not gonna happen) and gave me a list of about 20 supplements to start, some things were prescription and he gave me scripts. I ran those by the ped- one was B12 shots and I asked if they would be willing to give them or to teach me how, and she did balk at that. And I see both sides of it, because the ped might be pretty open-minded but she is traditionally trained. The DAN in question is very well-respected in the DAN community, but apparantly thinks we're made of money. We use Super NuThera but the DAN basically had us switching out to giving each vitamin seperately, plus all the other stuff they recommend. It would have cost hundreds of dollars a month just for that.

That's funny, I've been contemplating the France urine test. I'm much more willing to try tests that only involve a urine sample. Blood draw is not pleasant.

And I do want to help Justin, but honestly, we do not have the money to spare. We're spending plenty now, between the supplements we do use, and the whole allergy diet we're spending as much as we can. And I know, stories of people taking out home equity loans for ABA-- so what if you already have a mortgage and can't get more credit? How do you pay for $1000 worth of lab work, or $60-75 for a DAN visit (plus $30 in gas), on top of the supplements and diet you're using, on top of regular co-pay for the regular doctor visits, when you're just breaking even every month? The only way I can think to do it, is for me to work more (I currently work part-time) but then there is a reality check with that... DH has a wacky work schedule and he has the job with the good pay and benefits. I am involved in the kid's school. I am available for IEP meetings and when the school nurse calls, and I have been very fortunate to have a job where my boss understands the demands of my family life. I suppose this is the purpose of SSI but how can you pay for all that "stuff" when you are limited to $2000 worth of resources and a cap on income? It's either that or we find a way to cut expenses to such an extent that our other child (the one that keeps getting forgotten in this process but has issues of his own) ends up being, essentially, penalized. And there's not that much wiggle room even if we cut expenses, there's only so much you can do. OOOooooh it's frustrating.

And it just gets more frustrating when you're presented with a bunch of different options from "well-meaning" friends. Some have tried, have offered special deals, but if I look at them objectively I can also see that the special effort they're making still has a pay-off for them.

Sorry for the rant.

 

[blondietink]

My son with classic Autism is now 16 years old. I have never been approached by anyone selling a "cure" or "miracle diet" or expensive therapies.Maybe it's because we live in a rural area. In my opinion, Autism cannot be cured, but the child with Autism needs to be accepted by society for what he is. We have never done ABA ... and I never will. There is no evidence that it works in the long run. Nobody in this area of the country uses it anymore. My son has severe food allergies which are medically documented, so we have had to create his diet around that. We have a therapy ball in his room and used to have a therapy barrel for him until he got too big for it. He is a polite young man, although people would call him quirky or eccentric. He wears headphone due to hearing sensitivity and you would not believe how many strangers question where I got them so they can get a pair for their child. If he didn't have the headphones, he would be walking around with his fingers in his ears all day. He can draw anything you ask him too and he astounds people with his drawing abilities. He is happy and doesn't really care that he doesn't have any friends . People in this town know him, love him and watch out for him, including the other kids at school.

Any profiteering off of a "cure" for any disability should be a crime, IMHO.

 

[mikkiwikki]

We have never done ABA ... and I never will. There is no evidence that it works in the long run.

There is over 20+ years of evidence that it works. Let me know if You would like to read some.

 

[perla75]

We have never done ABA ... and I never will. There is no evidence that it works in the long run. Nobody in this area of the country uses it anymore.

Wow, no offense but that is a very incorrect statement. ABA is currently the only empirically validated treatment for autism! This is why it's one of the only therapies for autism that some public schools will agree to pay for or incorporate into their public educational programs for children with autism.

Your own state department actually reports:

"The New York State Department of Health Clinical Practice Guideline states, "It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as an important element of any intervention program for young children with autism." The Surgeon General of the USA reached a similar conclusion."