But what if you don’t have autism?

9 Mar

There’s a bill going through in the state of Michigan (where we  moved from) that’s been popping up in my Facebook news feed.  The point of the bill?  To get insurances to cover autism diagnoses and treatments.  It’s being touted as a “moral public responsibility” even.

This is all great news…if your child has an autism diagnosis.

If your child doesn’t have an autism diagnosis but needs speech, occupational, or physical therapy…well, nothing will change for you.   Maybe someday, once they get this passed, they might add on other disorders…but if your child doesn’t have a “qualifying diagnosis”…well, sorry.  Again.

If this all sounds a bit, oh, bitter with a streak of jealous, it’s only because it is.  And because I know what it’s like to be on the other side of this fence, where I can’t get something for my daughter because she doesn’t have the right diagnosis.  Or because I can’t apply for a service dog here because they only train them for childre with autism.  Or because the first few years, we had to be very picky about what therapies and doctors we could see, because we had to pay out of pocket for it all and our budget was somewhat limited (especially when therapies can run over $100 an hour, or a blood test not covered by insurance is $1200. Been there, done that, wrote the check for a $250 autism screening that told me what we already knew, that Maura didn’t have autism.)

It’s not that I don’t want children with autism to have this coverage – not at all!  I just want all kids who need these therapies and treatments to get this sort of coverage.  Because little old me, with Miss Sherlock Syndrome, is just one voice that isn’t going to get much airtime compared to the power that is Autism Speaks.  According to the news article, the politicians are saying it’ll be easier to get this sort of coveraged pushed through if it’s only for autism, but then later on, other brain disorders could be added.  But that’s a lot of maybes…no guarantee it would happen afterwards, and absolutely no guarantee that it would cover children with generic developmental delays.

It’s hard, this sort of story. I know that I could come across as bitchy and uncaring.  I don’t mean to be.  I think this sort of news is great for my friends who have children with autism, would would greatly benefit from this sort of insurance coverage. I want them to have it.  I just know there are other families out there who don’t have an autism label and could also desperately use the coverage.

I just wonder why, if it’s such a moral responsibility to help children with autism, why isn’t it a moral responsibility to help a child like mine?

And I’ve just realized, there’s a bit of a whiney tone to this post…I can’t allow that!  So I shall sign off with a funny story…

One of our boys has mild Asperger’s.  We went to parent/teacher conferences and in talking to the first teacher, we realized that we’d never mentioned the Asperger’s factor to the school when signing the boy up.  So after the teacher mentioned the boy didn’t like speaking up in class, we mentioned how he has Asperger’s, so sometimes it shows by outright bluntness…like his idea of constructive criticism is “that didn’t interest me at all.”  sigh.

The teacher responded with “Well this makes sense now!  I just thought he was blunt because he was American…um…no offense…but Americans can be blunt.”

We got a laugh out of it and agreed.  But it was funny, that one of the boy’s quirks is just written off as “being American”.



14 Responses to “But what if you don’t have autism?”

  1. Stacy Cancelarich March 9, 2012 at 6:57 am #

    Understand what you are saying in every respect. Yes, tough to post and as you recognized fraught with the possibility if angering some. I think it is important to note thought that a victory for one often leads to a victory for others. As Brown vs. Board of Ed victory was then the basis for the case which led to rights for children with disabilities to attend public schools. So it is alway important for all of us to be glad when one person or persons gains rights they should have, because it gives hope and power to that being the case for all. Let’s hope that is the case here. We have a long way to go and as a Social Worker who runs a program for adults with special needs I know we have come a long way from the care they received to what is available now, but there is a long journey ahead.

  2. KellyKelly March 9, 2012 at 7:40 am #

    I love reading your thoughts because they open mine up so much. I am the parent of a child with AS. I have been unbelievably fortunate that our insurance has paid for most all services we need for Drew. I have watched this issue from a back seat thinking that it is a great thing that these children will be getting the services they need.I never looked at it from behind a different driver. Thanks for opening my eyes yet again.

  3. Janice March 9, 2012 at 7:53 am #

    Well, I’ll tell you what. Maybe we should start some sort of group for kids without a diagnosis. Until I started blogging, I sometimes wondered if my daughter was the only one out there.

    My daughter’s neurologist has been very good about giving her some good, general, usable diagnoses. Words like Congenital Muscular Myopathy, Apraxia of Speech, Auditory Processing Disorder, Seizure Disorder……the list goes on and on.

    Sadly, all of these things are just smoke and mirrors. Sure, they are all true, but they are just fancy words for the symptoms, not a name for the actual cause. They’ve got us through most of the red tape, though, so I won’t complain. I’m sure you are familiar with all of them.

    Good luck to you, and like I said, I’m ready for the group if you are.

  4. Suzanne Young March 9, 2012 at 9:42 am #

    I too am a mother of a special needs daughter with no diagnosis other than “intellectually disabled.” Clearly here is a little baby who can’t suck, gag, or swallow, is hypotonic, can’t lift her head up till she is 6 months old, needs a feeding, tube, etc. and because the doctor can’t check off a box she can’t get services!

    Like Janice, we were fortunate that some of the specialists at Children’s Hospital in Oakland, CA said she had “hypotonic cerebral palsy” so she could getPT & OT services. When miraculously she started walking at age 3 she was removed from the service list. Talk about bittersweet. Yeah she’s walking (but still delayed) but now no services. Same goes for speech services throughout high school. I was grateful for the 20 minutes PER WEEK in a group setting no less, but it is evident she needs more help. Grrr!

    Perhaps is insurance will cover autism issues then there will be some more room left for people in public schools.

  5. Marianne Artymko March 9, 2012 at 10:02 am #

    I agree that there should be funding for all or none. To pick only a few “syndromes” to help says you must have a label to get help. Well, their labels aren’t always accurate, and they don’t change the fact that a child needs help.

    I have five healthy children so I can’t say I relate though I do sympathize. I am often upset by the discrepancies out there and have, thus far, very much agreed with your views on disabilities in general.

    Keep plugging along using that tenacity from your great-great?-grandmother to fight for your children.

  6. Renee Anne March 9, 2012 at 10:33 am #

    While my son doesn’t have Autism or any other developmental delay (that we know of), things like this legislation in Michigan drive me absolutely nuts! There are so many children that need the therapies like you mentioned (adults, too, actually)…and the fact that they can’t get services because they don’t have the “right” diagnosis (or any diagnosis at all) seems so unfair. And the caveat of “oh, we’ll add other disorders later” seems like such a cop-out to me. All that would do is add another “right” diagnosis to the list…but that still leaves out children like Maura that don’t have any specific diagnosis.

    Why should some children get benefits and services while others don’t, just because they don’t have a diagnosis?!

    It’s so infuriating to me…and I don’t even have a child that needs these services!

  7. Angela March 9, 2012 at 11:44 am #

    I hear you. And I agree with your statements. I do think this is a step in the right direction, however. New Jersey took their insurance mandate to include autism and “other developmental disabilities.” Get involved with your state Family Voices and Family to Family Health Information Center and perhaps there is room for further advocacy. Good luck!

  8. Megan Matthew March 9, 2012 at 12:09 pm #

    I would love if all our kids could get the therapies they need. My daughter has Down syndrome, and our insurance won’t cover speech therapy after the age of 6 because the schools will cover it…as if there is enough time in the day for all the kids who need services to get adequate coverage at school.

  9. Leslie M March 9, 2012 at 1:04 pm #

    I feel the same way! Services are so hard to get here in AZ, that I had a doctor ask us if they could DX my son with at risk for autism just to qualify. We declined (it felt wrong to us) but it showed up how helpless not only as parents we are but doctors are against trying to get therapy for our son who is developmentally delayed without a real DX.

  10. Courtney Frerichs March 9, 2012 at 2:47 pm #

    I agree wholeheartedly with you. My daughter was born with Microcephaly (small brain) and that is all we knew for years. When she was 5 we took her to a Neurodevelopmental Psychologist and she was then diagnosed as Autistic and Moderately Mentally Retarded. We did this because through our insurance (military) she would be able to attend a private Applied Behavioral Analysis School for special needs children if she had a diagnosis of Autism or Pervasive Developmental Disorder. We were also desperate to get her out of the SW Missouri Public School System (she was so unhappy there she rubbed her thumbs raw). We now live in Denver and the private schools here are more expensive than our annual CAP, so she is again in public school and receives ABA Therapy in our home. We, as anyone whose insurance covers ABA Therapy are incredibly pleased to have these services available to us. But I have also felt saddened that not all special needs kiddos are able to access this service. It just doesn’t make sense, there have been special needs children for hundreds of years, but because of all the publicity and funding surrounding Autism, things have changed dramatically in the last ten years and therapy doors have opened if the label fits you. I don’t think it’s fair to all the other Diagnoses out there, and we all know public schools can’t give our kids all the 1:1 attention and various therapies they need. What ABA Therapists do for my child can be applied to all children, special needs or not, why limit it to Autistic Children? Again, I am grateful our insurance doesn’t hassle us and we are easily able to acquire additional OT, ST, or PT as needed; but don’t understand why others can’t. And, as soon as my husband retires from the Navy (one year from now), we are also done receiving ABA Therapy, unless whatever new job he has covers this on their insurance plan. There is always a part of me (the bitter part) that thinks people view Autism as more important to treat than other disorders, or more ‘recoverable’, and my daughter wasn’t worth all this money and effort until I filled out a bunch of paperwork, Ella was tested, and Autistic was her new label, perhaps only by the Grace of God.

  11. Stacey March 10, 2012 at 7:24 pm #

    Once again, your honesty and way with words has touched me. I am learning quite a bit as a graduate student pursuing an MAT in Special Education; however, I often find that I am learning even more from you. Thank you! 🙂

  12. Angel Brookins March 11, 2012 at 3:06 am #

    First off, I love how being American can be a mental illness (truly).
    You are the farthest possible thing from bitchy and whiney and please don’t for a moment discount yourself… you deserve a chance to vent. We are here with you and we’re pulling for you. As a person who’s been threatened by her own doctor with, ‘I should write you up in a Journal under the heading ‘What can go wrong with the human body”, and who is still fighting with disability lawyers and insurers after more than 15 years of declining health and increasing inability to work… I completely understand if you actually ARE a little bitter about the ‘big guys’ being the only ones that any one wants to help. They do deserve to be helped, but by God, so do you! I have started to include your family in my prayers. I’m not sure how much that will help seeing the state that ours is in, but maybe it will give you a micro-boost? Good luck!

  13. Ruth March 11, 2012 at 10:56 am #

    Embrace your inner (and outer) bitch. Your daughter is worth it! And I love your main point, EVERY son or daughter is worth it!

  14. Karen March 12, 2012 at 2:25 pm #

    Well said!
    Every child, no matter the disability, deserves help. The “airtime” seems to be louder if the famous are involved . My grandson has no diagnosis, is non mobile and non verbal. We know first hand about service denials. Life became a choice…pick the treatment or activity that reaps the most benefits for him.
    I feel the same about cancer. Just had breast cancer and feel I am not a survivor but cured. Thanks to some big names the funding for research has made a cure possible .Fortunately I had the means to have a mammogram every year. At last some of the funding is being used to provide testing for those who can’t. Now if they could share for lung, pancreatic, bone, etc….there might be more cures.

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