DSM-V: Help or Hindrance? Make your voice heard

October 3, 2013

Earlier this year, revisions to the autism diagnosis in the Diagnostic and Statistical Manual, Fifth Edition (DSM-V) were announced. Parents of children diagnosed with autism were concerned that this change would affect services provided to their children. Even though the new criteria for diagnosis are touted as an improvement to diagnosis, which will provide better services, these parents’ fears seem to be justified.

After merely three months since the DSM-V came out, the Autism Action Network sent an action alert requesting information about how services are being eliminated for individuals with autism. It seems that there are institutions and organizations that have taken the DSM-V criteria and used it to say, “you no longer have autism; so you no longer receive services.”

I have to lament here that the funding battle to help our children just never seems to end. I believe unreasonable thinking has sentenced this population to warehousing or to depression, incarceration and even suicide. From the DSM-V standpoint, it seems we value money far more than the lives of these individuals—we are unwilling to incorporate changes that would make a space for different abilities.

So much of the battle has to do with misperceptions and misunderstandings and staying silent about them. There are ways to foment change and many are incremental. However, if we don’t raise our voices, little will change. Advocacy starts on an individual level and will not reach a global level until our voices are heard.

The Autism Action Network is one voice that is raised. Send your stories to this group and help turn the tide.

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2 Responses to “DSM-V: Help or Hindrance? Make your voice heard”

  1. Michelle Says:

    As a parent of two children with autism, this is obviously very disturbing. Firstly, my eldest daughter is higher functioning. She has improved greatly because of the supports received being in a medically related category of Aspergers. She is autistic, ADD- non-hyper/ processing delay, with general learning delays. She would probably not be able to graduate without the supports she receives at her public school here in Minnesota, without that label. That is what is so concerning, since you can see how not having this specific label, she could have been denied many invaluable services and supports which have enabled her to attend a public school mainstreamed with a detailed IEP (Individual Education Plan). Additionally, her younger sister, who is quite severely autistic, was originally labeled as PPD at 3 years old, her “label” being later changed twice. First to moderately severe autism and later additionally developmentally disabled ( mentally retarded) with sensory integrative disorder. This occurring due to early intervention starting at age 2 1/2, various testing batteries, and later an IQ test. We were fortunate. Although we are lower income due to me being disabled, we have a great doctor and concerned and caring Special Ed teachers. Plus, we have private medical insurance in addition to MA that actually covered an IQ test. (without the DD/MR diagnosis she would not qualify for the waiver supports) Also, enough cannot be said for God enabling (credit where it is due) us to have the courage and strength to be a polite squeaky wheel to fight for our kids as well as others. To get to the point, without these labels (Aspergers, PDD) our kids could have been denied services. The big business of insurance and government needs to look at the bigger picture. Investing in these individuals now leads to more productive lives in the future. Will they deny the next Bill Gates or Albert Einstein, who were believed to be high functioning autistics individuals?

  2. Mariah Says:

    Oddly, there were a lot of folks who thought this would help- that being labeled “Aspergers” or PDD-NOS wasn’t considered severe enough to get services in some places. So now, places are using the old labels as loopholes rather than lumping them under the autism umbrella. I Funny thing is that dyslexia & ADD are often seen as “milder” LDs but those children are still usually given accommodations.
    I guess the real bottom line is that we need there to be enough funding & services (both public & private) for individuals with many types and degrees of disability, instead of fighting over the scraps. Right now, it’s kind of like trying to decide which starving baby bird to kick out of the nest. I’m hoping though, that the healthcare reforms will make it easier for families and individuals to get what they need.

    One thing I can say in favor of the DSM-V is they did get rid of Gender Identity Disorder, but their definition of mental illness in other ways is broad enough that I wonder how many drug company reps were making friends with people on the committee!


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