Wednesday, December 14, 2011

Getting rich off an autism diagnosis

Doesn't the very idea of getting rich off of your child's autism diagnosis seem laughable? I mean, if there was a way to turn autism into a profitable enterprise, I would definitely be living on easy street with 2 boys diagnosed on the spectrum. The whole notion is absolutely ridiculous. Crazy. Cuckoo. Ludicrous. Insane.

Well, imagine my surprise when I saw a post in my Facebook feed yesterday that was titled, "Attorney Claims Autism Parents Are Just In It for the SSI Gravytrain." Say what? Come again? An SSI Gravytrain? Wow, if only I had known!!!

Give me a (insert your favorite expletive here) break.

Intrigued, I clicked on the link. And then my jaw hit the floor. At first I thought maybe it was a joke. When I realized it wasn't, I started getting angry.

The post linked above talks about an article from the The Los Angeles Times, as part of a series on autism. The focus of my shock and dismay was a comment posted by a reader in reply to the article. It reads:

"Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare.

The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this "epidemic." Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.

When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.

I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.

Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism."

Okay...whoa! Did she just equate autism with retardation? Did she just say that autism is every parent's dream ticket to government support? Did she say there is a great deal of funding for autism? Holy crap. Did I just step into the Twilight Zone here?

Let's just get one thing out of the way first. Autism is NOT automatically synonymous with any sort of intellectual disability. A majority of children on the spectrum are of average intelligence or even above average. This kind of comment proves to me how very uneducated she is about autism.

Moving on to the laughable portion of the comment...seeking an autism diagnosis in order to get a government handout. Are you kidding me? And, I'm dying to know where all the money is that she's speaking about. In my beautiful State of Washington, when you go through and file disability paperwork through the proper department, I've heard the wait can be anywhere from 3 to 8 years. Yes, that's right. Three to eight years! Oh, and our family doesn't qualify, by the way. We don't have a "classic" autism diagnosis. We're not the only ones. Lots of people I know are not able to qualify their children even though they could use some help.

My State is desperately underfunded and unable to keep up with the increasing needs. We are facing a huge crisis here due to lack of funding and lack of legislation. In Washington, autism is still a diagnosis that is widely discriminated against by insurance companies. This creates a major financial dilemma for families who are trying to care for affected children with proper medical interventions. An autism diagnosis is definitely NOT the golden ticket. If it is elsewhere (by some miracle), maybe I should move!

I guess the whole point of me bringing this up today is that comments like these prove how much education still needs to be done about autism. The woman who made these insensitive and clearly ignorant comments just doesn't get it (and probably doesn't want to get it, as far as I can tell).

Those of us in the autism community are very "aware." We obviously don't need Autism Awareness Month in April to remind us of our daily experience. Besides, talking about autism all of the time can be exhausting, and at a certain point it can become a worn out topic. But, we still have a big job to do.

The world needs to know what we go through. The world needs to know what our kids go through. The world needs to know that we have a big problem on our hands as this generation of affected children is quickly growing into adults. The world is not ready for them yet. Our kids need to have the best possible chance to succeed, and I guarantee we are NOT doing enough right now to help them. I see gaping holes in proper services and interventions every day. My hope and my dream is that all of this will change...before my boys are all grown up.   


*One last note - a disclamier of sorts:
I thought I should let you know that I saw the link to this post from the Facebook page for the Thinking Person's Guide to Autism. I requested permission to post about this article but did not receive any direct communication back via email or Facebook comment reply. Because I felt so strongly about the topic, I thought I would go ahead and write up my post. I hope that they are okay with me doing so.

I sincerely encourage you to not only visit their Facebook page, but please read the article referenced above in its entirety. It gives a lot more information that is worth the extra time.

Please share your thoughts about this in the comments! Am I the only one who is gobsmacked by this woman's comments?   

21 comments:

Kitty Kay said...

WOW! Where is this gravy train she speaks of cause I sure as heck missed it. I just ignore people like that as they don't want to get it and some fights are just easier to walk away from.
I know in the state of Virgina the wait list for a medicaid waiver for autism is 10 plus years. Doesn't everyone want to sign up for that wait. Lets not even get started on how complicated getting SSI is. Most people will be denied and have to appeal blah blah blah. I'm sure as with everything there are people who abuse the system but they are the minority. And FYI lady who wrote comment a family with both parents can qualify for welfare.

bethschubert said...

Oh. Wow. As a parent of a full blown spectrum child who does not receive ssi...ignorant does not even begin to touch what the original blogger is... And last I checked family support services waiting list has been suspended due to budget cuts and before that the waiting list was averaging a decade or MORE!

Flor said...

We qualified for government help several years ago but they told us that even though we were eligible, there was no money available. We had to spend out of our own pocket. So, what gravy-train?

melissaestchcg said...

Can you send pics of puppy? Does he have his puppy shots/worming? What is the price? My son is diagnosed with classic autism . We do not qualify for ssi because my income is too high?! We have also been on the autism Medicaid waiver waiting list for 7 yrs! People with these ludicrous ideas is what makes me so afraid for the future, not just of my sons' future but for the future of all kids/siblings/families affected by autism.

melissaestchcg said...

Excuse my puppy questions start!!! I pasted and didn't even realize it! Fyi we live in Indiana, and we don't receive ANY government help.

Aspie Kid said...

I don't know about any Gravy Train or people getting rich from autism, but I noticed a similar topic and thought I would post it here in case anyone is interested. The Coffee Klatch says Dec 21 Special Needs Radio episode is about Social Security Disability and how to find out what your family is entitled to. http://www.blogtalkradio.com/thecoffeeklatch

Luna said...

Well, she's just nuts. Given the support I get here in BC Canada, which is considerably better than what you all are talking about, she'd think I was TOTALLY milking it. Good God.

And the ignorance. UGH. So, high functioning autism and Asperger are just "future accountants" and low functioning autism is retardation? I would like to lay a smackdown on this person. Hard.

Liz Ditz said...

Hi CAM! I'm the author of the post you linked to, and a co-founder and co-editor of The Thinking Person's Guide to Autism

http://thinkingautismguide.blogspot.com/

Sorry we didn't get back to you but of course it is OK to link.

And thanks for writing this, too. I think destigmatizing the "surrounds" of disability is important too.

By "surrounds" I mean things like apply for and receiving SSI, the services around special education, and so on.

One thing I've learned in the last 48 hours is how much certain public figures such as Rush Limbaugh and his ilk have demonized government services like SSI.

It's time to push back.

Anonymous said...

As a parent of a son with Aspergers, and an accountant, I take offense to this! Not only would we not qualify, there isn't any funds available! Autism is an epidemic because of ignorant people like this lady! I can't believe she would say such nasty comments about someone's child. Not only is my son not "retarded", but I guarantee his IQ is higher than hers! I'd love to put her in a room with a stimming aspie and see if she still thinks I'm just labeling him for profit!

Lizbeth said...

I think the people who wrote this are from Mars. Last I checked, I was paying for private services and foregoing any vacations or buying new underwear so my son can continue to to got OT and Speech therapy. What a huge disservice this article is to the community.

Chelle said...

This woman's comments actually took my breath away and then I got MAD. My son has an autism diagnosis and we receive no funding from anyone, anywhere. We have been on the developmental delay waiver list for eight years with no waiver in sight. He has moved up a few slots every year, but I suspect the funding will not appear before he is an adult.

Someone needs to educate people like this. Getting rich off of autism? Seriously? More like bankrupting parents of those with autism who want to find the best care for their children.

We had private occupational therapy one summer and ended up paying over $3,000 for two and a half months of therapy. We couldn't afford to continue, even though the therapist said he should have therapy outside of the school system. Our insurance refused to cover the treatment.

I'd like to seriously smack that woman. Hard. In the face. With a chair.

Cari from Bubble Gum on my Shoe said...

Holy smokes coming outta my ears!!! That lady is ignorant. It just hurts to the core and makes me sad. And yes, I'd like to see the Autism parent living the high life, thank you. Now, I have a different perspective to offer here. I was divorced and left a single mom almost right after my son was diagnosed on the Autism spectrum. He does have a classic Autism diagnosis, however, if he were tested again now, 3 years later, probably not.

I was eligable for welfare at that point in time, I was researching any and all help I could get...trust me, isn't hard to get welfare, in fact very, very easy. At any rate, I had a flexible job and could work more, so it wasn't necessary.

Now, my son does receive SSI. No gravy train. And the person who can live off of it should get their own penny pinching reality show. I'll say it pays the gas to therapy each week, for which I am grateful.

SSI for Autism is almost an automatic denial. I did not do it alone. I had someone help me that does it for a living, 138 pages of paperwork later, a 2 hour phone interview and 2 genetic tests, he was approved. The lady that helped me was SHOCKED. She said in her 5 years of helping with SSI, no case of Autism had ever been approved on the first try. But I am a stealthy paperwork princess. I realize what a blessing this is to my son's life.

B said...

I was going to blog about this but you did a great job of it already.

I posted this on my FB for friends to read. It is beyond stupid to claim such a thing. This comes on the heels of hearing about a former classmate of my son's who just got bruises on his back and arm scratches from restraint at school. Yup, it's all about the benjamins alright. Pisses me off!!!!!!

Anonymous said...

As an adult Aspie, I really feel bad for missing this gravy train all these years!

I'm amazed at how ignorant and ill-informed some people can be. Give me a (expletive of choice) break…

Ictus75

Mom's 2 said...

I just read the blog re: Thinking Person's Guide to Autism.

I can't believe this information. I have a teenager with asperger's and the only reason we got a diagnosis was to get our son the education that he needed for early intervention and to help him get ready for real life, college, and a career some day in the near future. I don't get any money for his diagnosis. I've never even looked into it. We have always taken care of his needs on our own.

Caffeinated Autism Mom said...

Wonderful comments, everyone! I love each of your pespectives. Oh, and for the commenter who wanted to do a smackdown with a chair, I was practically in tears with laughter. Thank you for that! I really do appreciate all of you taking the time to share your point of view.

Carrie said...

It is laughable... gravy train? Funding? I think people don't understand what sorta money the gov't "gives out"... it's not livable... even if you can get it for your child.

And here no one wants to put out money for special education. Gotta love the "educational diagnosis" meaning your child's doctors are not qualified, according to the school board, to diagnose autism. You have to fight to have someone from the school system spend 10 minutes with your kid to decide if your child is gonna get a proper education. For some, it takes years to get that diagnosis.

Clearly that woman needs to come spend a day in our shoes... sometimes that's the only way some will ever get it. Except in 10 or so years when our kids are adults... it will be a bit more apparent that autism is real and we aren't creative enough to make this stuff up.

emmy moore said...

I will say otherwise, autism is very costly in therapy and development. I have worked with counselling richmond and according to a claim by a couple, their child's state is very taxing in their savings.

Kimberly Mullin said...

The attorney's notion about parents wanting to have an autistic child is I can say below the belt. I don't think there will be parents who wishes for their child to suffer from any kind of diseases or illnesses. Actually, a parent and a physician in oceanside ca urgent care also share the same sentiment as you have here. I think the most painful part in the view is that parents were being accused of wanting that for their children. Admit it, that is totally foul for the parents.

Anonymous said...

Gravy train huh? That original blogger should be so embarrassed that they just displayed their ignorance for everyone to read! I would love for them to spend one day in my home and see the " gravy train" we are on. Broken furniture from tantrums, peeled paint off the walls cuz it makes him "feel good" and let's not forget the fact that I can't work because nobody will babysit him. Co pay after co pay for therapy and the list goes on....not a cent from the state or SSI, nor did I try!....what a gravy train. Ignorance at its best.

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