When You Can’t Score an Autism Diagnosis

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Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.

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23 Responses

  1. Avatar greginak says:

    Fighting for funing parity is always a struggle. People fought for years for MH care to get paid at the same level as medical diagnosis. Substance abuse treatment still gets paid at a much lower rate then MH care. As a former child therapist i saw some of this; parents pushing for specfic diagnosis to get better funding or in some cases because a certain diagnosis made them feel better about their children’s problems. ( some parents want their childrne to have biology based illness which means their own substance abuse, MH, choas and abuse isn’t the cause of their childs problems.) As a therapist i think its important to focus on best, most appropriate diagnosis no matter what. Poor diagnsois to often leads to bad treatment. But fighting this fight has to happen at a national level. The Feds are the ones with the money for research.Report

    • Avatar Rose says:

      Interesting about substance abuse. Any justification?

      In this case, I think the only thing that any of them might be after besides the services themselves is the sense that their kids are just as valued.

      I think part of the problem is organizational. Autism is autism. I/DD tends to divvy up by etiology (syndromes, CP, etc.). The only national advocacy group is the ARC, which also advocates for autism.Report

      • Avatar greginak says:

        Only guesses why substance abuse is reimbursed at a lower rate ( and pays poorly); for many years a lot of SA treatment was done by AA type groups. They are great groups and do a lot of wonderful work but are far from the complete answer. So many workers at Rehab facilities were ex-users who were working out of a sense of personal mision and as part of their own recovery so they were willing to work for peanuts. Plenty of rehabs are also run in the same mission mode by small non-profits so they have little power or ability to advocate for better payment. That is changing to some degree. There is no reason MH and SA should be reimbursed worse then medical care.

        Advocacy groups are great but making funding and research choices based on the power of advocacy groups and who had the best magnet ribbons on their car doesn’t lead to the best distrobution of resources.Report

      • Avatar zic says:

        Rose, I’ve seen schools go after certain diagnosis for individual kids, and for the similar reason, the resources a specific diagnosis can bring to the school. Sometimes it can bring a new aide to a classroom, and if it’s a good aide, that’s a tremendous value.

        That money is needed in the system to support the child, and supporting the child supports his or her peers, too. But because some this diagnosis might bring in more resources then the careful diagnosis, there’s incentive to let the economics guide the desired diagnosis, instead of the diagnosis that’s in the best interest for the child’s health and potential.

        There’s a case to make to be made for funding research. We have a semi-sane executive branch building a new health-care delivery system based on evidence-based treatment.

        I suspect you know in your heart the things that help, you see the potential. They’re worth asking for. Particularly if you’ve already got a network of parents to work with.

        Thank you for writing this.Report

      • Avatar Kim says:

        Can’t shake the feeling that the epidemiology of autism is also responsible (partly) for more funding…Report

  2. Avatar BlaiseP says:

    Considering autism funding is being cut, things must be getting very bad indeed. Anecdotal evidence: in Augusta, WI, a family I know just had their autistic son’s therapy hours cut from 12 per month to four.Report

    • Avatar M.A. says:

      Didn’t you know? According to the Libertarians and Conservatives, everything would be just fine if we got rid of those pesky public programs and forced all these parents to pay for it themselves through health savings accounts.

      The Holy Market, Giver Of All, will provide don’tchaknow.Report

      • Avatar DBrown says:

        Under ‘raygun the sainted’, mental health was a proven waste of previous bodily fluid … uh, I mean tax payer’s money. Since libertarians want all government except that which pays them directly declared as useless, it would appear that they need to get together and lobby for their special needs to tap into that wasteful (read other people of need getting help instead of them) government spigot. Ask liberals about this issue – besides fully agreeing with your needs (don’t those pathetic whiners always agree with spending our money to help THOSE people!?), they will even help you. Interesting how libertarians never see this aspect of the social welfare system – that is, until they need it for those they care about.Report

        • Avatar Scott says:

          What does anything you’ve said have to do with tissue problems?Report

        • Avatar Rose Woodhouse says:

          A) Although I am pleased to be part of this mostly libertarian community, I am not a libertarian. I think ObamaCare is a great idea, and not simply because I benefit. I happily voted for Obama in 2008, before my kid was born, partly with the hope of some kind health care overhaul.

          B) This is only partly a question of government money. Money for services for kids with special needs is covered by three entities (besides out-of-pocket costs): school systems, Medicaid, and private insurance. Each of these cover many more services for autism than I/DD. If only private insurance changed policies, people with I/DD would also be in a better position. States mandate the rates at which autism MUST be covered by private insurance to a much greater degree than I/DD.Report

      • Avatar BlaiseP says:

        Ecch… that’s not a reasonable statement. Look, I’m a Liberal and I believe we ought to quit saying such things. Rose’s boy is one tragic point on a vast graph of need. To contemplate that graph and its scope and magnitude would crush the heart of anyone. But someone has to pay for it all: the entire graph must be understood. Obviously, someone made a law which benefited autistic children and inadvertently created a situation where some other mother’s child now prays for a diagnosis of autism. It’s Kafka’s cage gone in search of a bird.Report

    • Avatar Rose Woodhouse says:

      Things are bad for everyone. My kid’s speech therapy was just cut from 2 hours a week to 45 minutes a week.Report

  3. Avatar Dave Buck says:

    I had a thought that may not be pertanant to the overall discussion, but thought I’d put it out there anyway.

    Based on how you described your son’s abilities, perhaps he would not meet criteria for 1a and 1b. If he’s using sign language and sophisticated facial expressions, points, then there’s a good chance he wouldn’t hit criteria for 1a. He seems to be using nonverbal communication to meet his needs. And, given his other disabilities (e.g, not yet walking), his ability to develop peer-relationships may very well be appropriate for his age).

    I’m only going on what you wrote of course. Reading your words is not the same as seeing your son, and I understand that. I’m just wondering if he went through an entire ADOS conducted by a trained professional, maybe he wouldn’t hit the criteria for autism today?

    And I hope I don’t offend. My goal is to simply add to the overall autism discussion.Report

    • Avatar Rose Woodhouse says:

      Not at all offended. I think it would depend on how sympathetic the trained professional was. There are some complicating factors. He comprehends and produces far more nuanced positive affect emotion than negative affect (e.g., he rarely expresses anger and doesn’t recoil from an angry voice). He doesn’t spontaneously initiate joint attention stuff or show objects, although you can direct his attention. But part of the problem there is that he would always rather engage directly with a person than with an object, which is pretty non-autistic-y. In general, he’s got every hallmark of autism (serious sensory issues, stereotyped movements, perseverative behaviors, inappropriate use of objects, occasional self-injury) *except* he’s a happy-go-lucky people person.

      But even if he’s a borderline case now, he soon will be a definitely no-way-in-hell case. About 40% of kids with his syndrome have a diagnosis of autism. He is definitely among the more social of them. But those who wish to seek out a diagnosis get it.

      Again, I don’t think he should get an autism diagnosis. This is part of why I never have sought one, even if it is to our benefit. I just wish there were treatment parity.Report

      • Avatar Dave Buck says:

        And parity is the big issue that most people aren’t aware of, and why a really appreciate your post.

        Here in Tennessee, at least in our school district an autism diagosis does not guarantee services in the schools. Schools don’t do autism assessments here…just academic assessments. They are also supposed to ‘consider’ a medical diagnosis of autism but they do not have to accept it. Parents must often try to use another diagnosis to get services at schools.

        The same is true for many insurance providers. For serveral providers here, after a certain age, an autism diagnosis will not cover behavioral therapy and other mental health services. I believe this includes our state’s version of Medicare. So, providers must provide services under a different diagnosis…and this leads to a severe under-counting of how many people in our state have autism.

        We’re fighting for parity ourselves to get what people with ADD and other ID/DD recieve.Report

  4. Avatar Kazzy says:

    Advocating for diagnoses is a strange but very real phenomenon. When I go into a CSE or CPSE meeting, I advise the parents beforehand that I might paint a dire picture of their child but that they should not necessarily be alarmed by this; it is simply necessary to make abundantly clear how a child is struggling to increase the likelihood of receiving services. I never lie or otherwise misrepresent the truth, I just focus wholly on the struggles in a way unlike how I’d conduct, say, a parent conference.

    In the DC area, there is a great school for students with learning issues that, as I understand it, has a really amazing focus on art (the name escapes me at the moment). I wrote a letter of recommendation for a student for whom the school would be perfect: the kid was brilliant in many ways, amazingly creative and artistic, but clearly had some major learning disabilities. It was one of the stranger letters of recommendations, where I had to simultaneously sings the child’s praises while also making it abundantly clear that the kid had severe learning needs. “Joey would make a remarkable addition to your school, in part because he’s almost 6 and still can’t recognize most letters of the alphabet.”Report

  5. Love your blog. It’s great to see an educated blog on some of the issues that families are facing with autism. We’d love to connect with you guys more, see if there is any way we could partner (share links). Do you have time next week for a phone call?Report

  6. Avatar cara says:

    My son has a diagnose of PDD-NOS and even with it our current school district fights us and refuses to give services. he also has a diagnose of speech delay, sensory processing disorder and pica…. and more. the only services hes getting because i have fought for it, is ABA and I thank god for it everyday. 30 hours a week is hard but we do it. i want nothing more then to better my son. so the fight i understand the praying for a diagnose i understand. but even with a diagnose it doesnt mean its easier for us. Its even worst being a child devleopment major i know what he should be getting and i still cant get it for him.Report

  7. Wonderful post but I was wanting to know if you could write a litte more on this topic?

    I’d be very thankful if you could elaborate a little bit more. Bless you!Report