Rethink Autism: Resources for Families

So I guess if you are really financially unstable (like my family) then my daughter doesn't deserve to get help.

Thanks so much for airing this piece! It looks like an amazing service that for once is not exorbitantly expensive.

Hello, I am a pediatric nurse of 30 years in Boston. I think we are in a very sad situation when it will cost families 1200.00 a year on line to assist 1 in 166 children and their families to cope with such a devastating diagnosis. It should be free! ABC should make this comment. Another way for people to prey on others for a dollar. Shame on them.

1 in 166 is an old #. It's even worse than that.....1 out of every 96 boys.
Now does that make them pay attention?

While trying to be as civil as possible, I must ask: Do you get paid for your services as a pediatric nurse? It is indeed sad that there are so many children, and families, suffering from Autism. This company seems to be about bringing treatment that works to those who need it at a more affordable price. They should be applauded. Its this kind of goo old fashioned American ingenuity that can supplant the need for subsidized everything in this country.

I am a grandmother of a 6 yr. old non-verbal grandchild with autism - what I've seen my daughter and son-in-law go through the last 4 plus years is incredible. All the red tape, paper work, dead ends, etc. It's so disheartening, they are so thankful for a good insurance policy. Many families can not say that, I know. I watched with interest this piece on the news tonight and while I found it interesting, it does seem like one MORE expense for parents who already pay so much for good care and schooling for children with autism. I hope it's not just another "ploy" for these families who may be desperate to try anything for their child.

Being a professional in the world of autism, I can say that this service is a gift and a curse. The services professionals like myself offer are expensive, but worth every penny. A highly trained behavior analyst can provide treatment that no website can begin to provide. I believe this website intends on providing supplementary support for families, rather than the base of a home treatment package. In that role, I fully support this website and the service it offers. The greater issue at hand is that of insurance coverage for aba services. Regardless of the increase in autism diagnoses, they are indeed on the rise. I am only personally aware of one insurance company that provides coverage for ABA services, and that is a military insurance provider named Tricare. When the insurance companies step up to the plate, then the problem solves itself.

I've done ABA for year and learning it on the internet is the stupidest and most detrimental thing to do.If you do this wrong it can hurt a child's ability to learn properly. The video on ABC showed the worst ways of helping a child. Go to your local regional center and you can gain services for local ABA providers that are trained and can help your child succeed

Make that 1 in 99 by the most recent study. If only everyone could know the challenges of caring for and teaching a child with autism whose three major problems are with repetitive thoughts and behaviors and communication dysfunction which can both restrict them from social interaction at the most fundamental level as say, eye contact or touch. Some 30% will go on to develop seizures and many more embed themselves in their restrictive lifestyle. And if you could compound that battle with daily onslaught of community misunderstanding, untrained teachers and even doctors who keep perpetuating the story that there is nothing wrong, until again it is almost too late to turn it around. That's when the impact of care and special therapies and trainings hits requiring the repetition ad nauseum of all your child's hidden deficiencies and faults while ignoring the clock that continues to tick away during the mind-numbing paperwork. All this to finally find that there is beautiful child in there and the services that would have set them free must battle uphill to right the wrongs of learned helplessness, wrong-thinking and poor if any communication. See a child whose family is either young enough, strong enough, resilient enough or rich enough to get the early intervention care or later and you will be amazed, not only at what these children can become but at what the families, that is to say those that have survived the onslaught, can enjoy. Enough people just do not have the imagination to envision the reality of living, coping and conquering that which is autism.

Um, to those that argue this use and suggested regional RIGHT NOW. hahahahaha. They are bank rupt.
They deny services. The providers all over charged and so many of them all sit on the same time as the bargaining table. Most of the good behaviorists do not vendor with regionals anymore because of the crooked nature and the limits on helping. The mediocre ones are ineffective or they hire college students and farm it out like cleaning services. A burn out industry.

We have paid cash for the best and it has taken every thing we had. We pulled out of the systems and life finally changed. Most people cannot do this and we have lost everything we had but gained our son. We have what people call the best doctors in the world but do we use all of their medication suggestions they push for research..NO way. We use nutrition, supplements and research.

Um. how many people in the news, pediatric nurses or doctors tell parents about GABA, the amino acid we need for speech, coordination and muscle tone?
How many discuss natural lithium orotate..found in lemons? na, they push pills. The greatest mind, who founded the greatest institute before new people got a hold of it....told me when he met my son, DO NOT LET ANY ONE MEDICATE OR DO HARSH TREATMENT with your child because it is all about money. He has published against his colleagues and outed them all. Funny how it does not get into the news.

To clarify, I mentioned medications because people use ABA and meds and there is so much more that they need.

Actually, 1:20 have some neurological challenge.

The thing is, those who think they have escaped this now..have a high probability of a grandchild, a neice or nepew in their lifetime.

It will be interesting to see how those who cannot handle this now find those pioneering families some day when it is their turn.

so if you are a lower income family like mine who already struggle with the burden of co-pays for various therapys, here's yet another fee. 100.00 a month is alot of money to some people.

Our 2 year old son has been with our ABA therapist for 6 months now; we also have other services provided by the state. I have seen vast improvement from our son since we started ABA services. I agree that it can be expensive - but worth every penny. I have to warn that it is extremely difficult if you do not know what you are doing or if you give in to the crying and the fits that are thrown when you are working with your child. You want to comfort your child when he is screaming his head off when you are trying to work. Please be cautious when doing treatments yourself - just as you shouldn't operate on yourself because you viewed a video on how.

I am a behavior analyst (who is a BCBA--Board Certified Behavior Analyst) that has worked with children and adults with autism and developmental disabilities for many years. I agree that a BCBA providing in-home ABA therapy is the gold-standard for early-intervention treatment for children with ASD. However, it appears that Rethink Autism has done their research well and realized (as with any good product brought to market) that there is a gap that currently needs to be filled. While the number of BCBAs across the nation continues to grow, they tend to cluster where the money is (as do other professionals). Accordingly, there will always be geographical pockets where a BCBA is not available for direct services. If done responsibly on both ends (Rethink Autism, and the caregivers), this service could be a great supplement/alternative.

For those that say they should give this away free, I ask how many of you work and give away your paycheck each week? Perhaps a sliding-scale payment model could be considered by Rethink Autism, but that is their choice. More importantly, people need to continue to lobby for more insurance coverage for ABA treatment as Rep. Dan Burton (R) has done. Additionally, use your rights to a due process if a school district refuses to provide school-aged children with ASD effective (i.e. ABA) treatment. This will realistically continue to take time to accomplish. So, the Rethink Autism services again can fill the gap during a precious narrow window of time that is critical for the early intervention services to be effective.

Do your homework, and be a squeaky wheel.

ABA is a very effective technique for teaching skills to children with autism and other developmental disabilities, but there is hardly anything "magical" about it. I personally feel that some of the most effective work comes when the family does the teaching and provides non-tangible reinforcers. It certainly facilitates generalization, which is one of the biggest shortcomings of discrete trial training.

As for the cost, I am often challenged by the ethics of the providers. I have seen agencies that contract for ABA services hire college students for $8-12 an hour to provide services, and then who knows how much they charge the family for the services. I've seen some people suggest that in some markets that it reaches $180/hr. I'm sorry, but that is obscene.

And don't get me started with "only 40/hrs a week is effective". There is no credible rubric to determine if 10, 20, or 40 hours is most effective. More doesn't always equal better, and one has to wonder if the more hours is motivate more by income than efficacy.

If there are therapies that actually work (traditional and/or non-traditional), it is immoral and criminal to withhold such therapies due to lack of money.

Since most people do not work for free,
an organization like "Jerry's Kids" is needed for autism.

I nominate Jenny McCarthy and Jim Carey to start the ball rolling. They have clout.

This is to the doctors, nurses, and therapists: Yes. You need to make a living. Seriously, $l00,000 for what?
How many actual hours of therapy per year does a child receive from one of you guys? I assume you have more than one patient. How many millions do you need to feel comfortable?

This is what it comes down to, all insurances should provide it and if not, it should be available through federal grants. Why is it, that our Government doesn't see, that with these high numbers, if our kids are not helped as soon as possible and as often as possible then they will be more of a financial burden to others later. I know this, two of my kids are autistic, one is 12 and the other is three. There are to many children with Autism, any help should be provided, without exuberant cost to the families. We need to push some kind of Legislation that mandates help for our kids.

I am a pediatric nurse practitioner who has worked with families who have children with autism. As part of my doctoral work, I, too, created a web-based interactive ABA program entitled "First Steps in Autism". Due to funding issues, the program never got off the ground. I was delighted (and somewhat saddened that it was not my program) that somebody has finally brought this much needed intervention to families.
It's true that ABA can cost up to $100,000 per year, but the therapy is not done by highly trained experts as the news story stated. In Wisconsin, ABA intensive therapy is conducted by high school graduates who have completed 30 hours of training under the guidance of a licensed psychologist.
Research finding supports the 'family-based' model over the 'clinic-based' model that is most often used. Kudos to Rethink Autism for providing this much needed therapy at a low cost. I thought the idea was viable 3 years ago.

So, why the $l00,000 price tag if high school students are doing the work?
What do they make - from nothing to $l0 per hour?
Shame on the people who charge that price tag. Shame on the lawmakers who don't change the insurance rules regarding this therapy.
They need to be shamed in public - insurance companies, lawmakers, and whoever set the $l00,000 price tag!

I'm angry for these kids.
ABC, good job reporting this, but carry this through. Follow up and expose this on your tv news channel.