Autism is Unaffordable

Holly Robinson Peete, a wonderful actress, model and mom wrote a great article for Huffington Post on the Eight Facts About Autism Not Covered by the Media.

I cried with agreement reading every point.  What struck true to me most was the fact that “Autism is Unaffordable”.  Proper private therapy, if you are very wealthy, is extremely expensive.  At $100 to $150 a session, 25 to 30 hours a week, we are talking $7 – $10,000 per month.  If you are middle class, it is impossible to afford and if you are poor, it is unattainable.  I know people who have taken out second mortgages to pay for therapy.  I know others who hire lawyers to try to get state aid.  I know some people who give up and surrender to the fact that their child will never be able to function in typical society because therapy is out of their reach.  And that is just the financial obstacle.

What about accessibility?  How many good, trained ABA therapists are there?  How many of them are overbooked or have 25-30 hours to spare?  How many autism schools have outreach programs to accommodate children under 3?  How many openings are there in programs of that kind?  Not many.  The demand is very high.

And state early intervention programs, like the one we have in NJ, are not designed to help “cure” a child.  They are educational models designed to instruct the families on how to help the child until he/she reaches school age when the education is taken over by the school district at age 3.  Therapy hours are hard to come by.  Therapists are not always the best, but there are some great ones.  The organization and effectiveness of the program are lacking and the administration can be horrific.  I have three state agencies overseeing my daughter’s therapy.  They argue with one another, they don’t always do their jobs and they are scrutinized for giving out too many hours.  In NJ, early intervention is not free — we personally have a very high cost-share payment, but not nearly as high if we paid for therapy privately.

But I ask – WHY is it so difficult to get treatment for this disorder?  Why can only the extremely wealthy afford it?  Why with a national autism rate of 1 in 150 is treatment not covered by health insurance?  Why isn’t treating this disorder considered a priority?  What is going to happen to this generation of children that are going untreated or under-treated?

It is so frustrating for a parent – being thrust into this world — to make sense of the apathy and lack of education surrounding this disorder.  You feel your child will be destined to be lost forever.

As I sat in my dining room last week after my IFSP meeting, I was numb with disbelief.  I could not believe that treating my daughter, a toddler,  who has autism, was not considered important to my state service coordinator.  Why does no one want to help her turn this disorder around?  Is she so far gone?  Is she a lost cause?  I don’t think so.

If Ava has any other disease or disorder – diabetes, for example, she would be treated without a stigma attached.  But autism carries its own baggage with it.  There is no crystal ball, there is no cure, there is no blood test to make it seem real.

I remember the AIDS crisis in its infancy.  Two good friends of mine contracted the HIV virus in the mid-1980s and died within a year of diagnosis.  It was a horrible, painful death for both of them with so much suffering was endured.  What was most disturbing, was that people were uneducated about AIDS then.  I remember nurses refusing to come into my friends’ rooms.  I remember doctors not wanting to treat them.  I remember people were afraid and their illnesses were “covered up”.  I think both of them would have survived if they were diagnosed today – given the advancement in AIDS medications and care.  But both of them died too soon.

Is autism the same?  Does it have a stigma that makes people afraid?  It makes the government afraid or my daughter would be given the best treatment available without questioning me as if I was a nut case begging for the unattainable.  It has a stigma in society — no one knows what autism is.  No one is hard-pressed for a cure or research unless they have a child with autism.  And insurance companies are afraid of incurring the costs associated with autism.  Families are afraid too — some families stick their heads in the sand and hope autism just goes away.

Kim Cristo on GoogleKim Cristo on TwitterKim Cristo on Wordpress
Kim Cristo
Kim Cristo is the mother to a child with autism and a neurotypical child. She advocates for the rights of autistic individuals and their families.
Kim Cristo

Kim Cristo

Kim Cristo is the mother to a child with autism and a neurotypical child. She advocates for the rights of autistic individuals and their families.

7 thoughts on “Autism is Unaffordable

  • June 21, 2010 at 7:07 pm
    Permalink

    @drunkdevotchkababy@xanga – I like what you had to say. There are many different circumstances that combine to create the “unaffordability” of autism.

    And I concur therapists do deserve every dime they get. Some are kicked, bitten, bullied, and beat upon.. literally by the kids their helping and figuratively by the parents at times. Not to mention the red tape THEY have to go through.

    When I find a product or service being offered that I think would help my kids, I try to find a way to make it myself. I’m not necessarily the world’s best drawer (my oldest gets that credit 😉 ) but I do the best I can and my children succeed everyday making progress.

    Above all, don’t give up hope for your child to be the best he or she can be, even if that differs from what you originally planned for your child.

    Reply
  • June 21, 2010 at 7:02 pm
    Permalink

    @aspergers2mom – back atcha. I meant what I said, too. I think you’re an inspirational mom and anyone knew to this game should read your blog. Oh, I’m sure you’re not perfect (only God is) but you DO a lot RIGHT, in my not so humble opinion 😉

    It won’t let me delete the “k” from “knew” above.. Weird. But I meant to type “new”

    Reply
  • June 21, 2010 at 5:04 pm
    Permalink

    You may be looking at the ways society tells you it’s possible to help your child, instead of looking at what YOU can do to help your child. It may be a lot of work, but in the end, if you spend the time helping your children with what they are struggling with and don’t let up on it, I guarentee you that you’re going to see some changes. You don’t’ need all the specialized training for them, and you don’t need the expensive therapies, aslong as you’re willing to do everything it takes. You may even be able to look for students who have just completed their college or university degree’s, and see what they can do to improve area’s that your child is struggling in. Don’t give into the system and thin that autism is too unaffordable. Honestly it’s kind of pathetic to even hear a parent talk like that.
    I’m a Developmental Service Worker, and I find that therapies and therapists are expensive because at the moment there is a complete LACK of services. It’s not because the government wants to screw you over (mind you I’m from Ontario), but it’s because they do not have the funds to keep these programs running or open more programs, and therapists are hard to find to actually run these services. Other people HAVE to make a living too while providing support to children with autism, and I know many therpaists who’se days are so jammed with running aruond to different services that they deserve the money they get! So maybe you should look at it from a different perspective instead of just thinking that the government is out to make families with autistic children suffer and be discriminated against.

    Reply
  • June 21, 2010 at 2:59 pm
    Permalink

    I am autistic. I’ve received degrees and certifications in many different fields. I have two children (both on spectrum), have been fortunate to have loved greatly twice in my life (first husband is deceased).. and am able to earn a living.

    How was this accomplished? An involved parent (I was blessed with two involved parents). That’s all. I didn’t go to therapy because what the school offered at school (allowed me to progress ahead of grade schedule where needed to keep me challenged and extra help in math and visual tasks) was all that I needed in addition to my parents being involved with me and learning what worked for me, as an individual.

    My handwriting was atrocious (and still is when I”m tired and lazy feeling), but my mom made me practice anyway for hours at a time at the dining room table until I learned how to properly sized my letters and make my Rs go the right direction. They took the time to EXPLAIN things to me (Why it’s not polite to tell someone she shouldn’t wear mini-skirts because it accentuates her fat thighs).  Anything I needed to learn, they had me practice and practice the correct action. That helped me learn what was expected.  And above all? They had patience! When I’d “zone” out, they’d chase me until I responded to them. They never stopped giving me opportunities to interact with them in daily conversation at the dinner table. They gave me the thirty minutes for me to make my way to the bus stop even though it only took my brother five minutes because they knew I liked to stop and stare at the bugs (I was really looking at patterns in the light).

    None of those things was given to me at a school nor could it be nor should it be. Yes, therapy can be beneficial and there ARE great resources out there to help you do the best for your child. But you don’t NEED to buy flashcards pre-made: you can make them yourself. For my youngest son to learn facial expressions, we created drawings and glued them as faces to Popsicle sticks to make little people and we played games with them to reenact social situations. We printed mini-pics of family members and pasted those to Popsicle sticks to discuss the roles of family members and to practice routines. Those activities cost me $5 for supplies at the dollar store.

    Above all, remember this: each of us with autism learn at our own paces. We CAN learn. We WILL learn. In our own time and in our own way. We may not do it in the sequence neurotypicals do, and we may not do it on the same schedule but we WILL do it in the fullness of time. With your love,patience, and understanding, all things are possible for your child, regardless of the size of your wallet. As aspergers2mom has done with her sons, just provide the supports you can in the areas needed and slowly remove them when no longer needed. Your child will and can succeed…

    Reply
  • June 21, 2010 at 8:28 am
    Permalink

    We have spent every penny we have to get our two boys the help they need. The oldest is in college and was diagnosed with PDD at 5 and the youngest is a senior in highschool on his way to college. They still need alot of help and there are things that we as parents are not capable of helping them with. What the school provides is a drop in the bucket as to what these children need. Having done this for almost 20 years I have seen evey aspect of autism in our community. There are those that think their children will grow out of it, those that expect the school/government to pay for everything and those that take charge of their child’s future.

    In lieu of money and therapy every waking moment is a learning situation and only you as the parent know what your child truly needs. Take control of your child’s future and figure out how to help her.Research, get therapy materials on your own and help your daughter have a future.

    Reply
  • June 20, 2010 at 7:54 pm
    Permalink

    I have to chime in on this one..I have four children-three are on the spectrum. Two with PDD (nos) and the other with autism (nos) My second child (with autism) has been the most severely affected.  He didn’t speak..he screamed…didn’t sleep..stimmed all the time-didn’t potty train-I think you get the idea.  He just completed third grade in a regular setting.  He has an aid-but he is working at grade level.  My oldest son-stopped speaking at about a year..regressed,did not respond..did not sleep..did not potty train.etc. .He just graduated the fifth grade-he also won the science award for the year.  I did not spend a dime on any therapy for either of them. They received speech and O.t. (I believe an hour of each a week through the school district) and the rest of the time-it was up to us. We worked hard-my kids worked harder.  It wasn’t all work either. We did not spend every waking moment teaching them..

      The problem is that people see these schools and think it is an either/or situation. They think that if they don’t get into these programs-there is no hope.  Nothing could be farther from the truth. Yes Holly R. Peete can talk about how horrifically expensive these schools are-she had the option of using them. If I had her income, perhaps I would have to.  But we didn’t-so we did what we had to.  My children have excelled. The unfortunate thing is that regular peoples(not celebrities) voices aren’t heard on this subject.  

    Reply

Leave a Reply

Your email address will not be published.