The Autism Controversy: An Expert Gives Advice For Parents And Advocates
The debate about proposed changes in the way that autism and related disorders is diagnosed is not over. There are two issues at the heart of the debate. First, there is a scientific discussion focused on how to best diagnosis a number of disorders that both share core clinical features and also differ in terms of symptom expression. Second, there is an extremely important conversation going on to determine if the suggested modifications could result in the future loss or denial of coverage for treatments that are known to be effective. In order to understand better this part of the debate – and what parents and advocates can do to have their voices heard – I have the privilege of sharing insights from Gil Tippy, PsyD. Dr. Tippy is the Clinical Director – and one of the founders – of the Rebecca School in Manhattan, a school for children and young adults with neurodevelopmental disorders of relating and communicating. He has been a teacher, a psychologist or both for 33 years. He is the co-author, with Stanley Greenspan, MD, of Respecting Autism (Vantage Press, 2011). Dr. Tippy also has a large private practice in Oyster Bay, NY.
Here are his thoughts. I urge you to read them carefully and completely as he identifies what he sees as the primary way services may be denied or withdrawn if the proposed changes take place. Please note that the quotation marks define where Dr. Tippy’s remarks start and end.
“The controversy boils down to this. The committee who has been given the job of writing the Autism part of the new Diagnostic and Statistical Manual (DSM 5) got rid of the diagnoses of Autistic Disorder, Asperger Disorder and PDD NOS, and replaced them with the diagnosis of Autism Spectrum Disorder. This new ASD diagnosis will have two severity scales, to determine how severe the ASD is for the individual child or adult. The fear seems to be that some people who currently have a diagnosis on the autism spectrum will not meet the criteria for the new ASD. A concerned clinician even did a study cited in the New York Times article that showed that some people currently diagnosed would no longer get the diagnosis. Needless to say, people were scared at the prospect of losing services for themselves or their loved ones!
I do think there is good cause for alarm, but not because people will not longer meet the diagnostic criteria. After studying the new proposals for the last year-and-a-half, I think that no child or adult, previously diagnosed with an Autism Spectrum Disorder by a thoughtful clinical professional, would not meet the new criteria for Autism Spectrum Disorder. So, the concern I speak of is not from the clinical point of view. The main concern that I have, and that I think is very real given historical precedent, is that state and federal governments, and health care payers, will use the new severity scale to exclude those people who look like their ASD is less severe. Companies and governments are currently in the business of cutting costs and budgets, and I am concerned that they will use the new severity scales to reduce payment to people.
There is great hope here, however. Everyone who currently receives services or whose loved ones receive services can speak up! What is critical, where we need to take action, is in letting our state and federal legislators know that we vote, that we are watching this issue closely, that we demand appropriate coverage for autism, and that we will not compromise. We need to state, unequivocally, directly to our representatives, that we will not support a reduction in services on the basis of this new set of diagnostic criteria. This is especially important now. The Affordable Health Care act, which will be finalized by 2014, will look to how the states have handled the issue of the new Autism Spectrum Disorder diagnosis. How the states act, particularly key states like California and New York, will directly influence how the AHCA is written and interpreted. That means that now is the time to begin to tell your legislators how you feel.
For me, the issue boils down to advocacy. I would like my overall message to be that the proposed changes in diagnostic criteria are worth being worried about, but not because the clinicians will exclude people from treatment; they will continue to diagnose and treat appropriately. If you, or your son or daughter has an appropriate diagnosis on the Autism Spectrum now, responsible clinicians will find that you or your children meet the criteria for Autism Spectrum Disorder under the new guidelines. The place where we need to put our energies is in advocating with our elected officials (on the state and federal level) to not allow our children to be excluded from appropriate treatment based on the new severity scales associated with the diagnosis. The time to do this advocacy work is now, as health care legislation is in the works, and powerful lobbying groups will go in and speak to your legislators if you don’t. Parents and people with the diagnoses need to be the people who are directing this legislation. If you do not feel like you can go directly to your representatives, go to the not-for-profits you support who hire lobbyists to influence legislation. Tell them that you do not wish to have them advocate for one behavioral treatment or another as they are now, but that you want them to advocate for the continuation of appropriate behavioral services under the new diagnostic criteria and under the new health care law. Insist with your favorite not-for-profit that they need to follow your wishes, or you will no longer support them financially. There is power in numbers, and if we all joined together we could assure a better future for ourselves and our children!”
Given Dr. Tippy’s experience servicing children and families with neurodevelopmental disorders, I hope you give his perspective some thought. But most importantly, since this debate is not over, I encourage you to find a way to have your voice – and story – heard in order to ensure that kids who need services get them. It is critical to join the conversation now to express your viewpoint as the debate is not over.