(This was a piece written for the Florida Developmental Disabilities Council in 2009.)

So far, the Task Force has already developed one comprehensive report of recommendations for addressing autism in the State of Florida and will begin working on another in time. The Task Force was created to advance public policy for the research, screening, education, and treatment of autism, to assess the availability of insurance coverage for appropriate treatment of autism, and to recommend a unified and coordinated agenda for addressing autism in Florida.

The Task Force consists of clinical professionals, service/support agency heads and both elected and appointed government officials, who are especially concerned with individuals on the autism spectrum. In addition, there is one individual adult self-advocate serving on the Task Force – myself.

The experience has been an eye-opener, with both positive and negative moments: I am pleased that something is being done to provide more resources and support for individuals on the autism spectrum and their families, yet disappointed that it comes at a time when fiscal issues threaten the possibility of anything substantial coming of it. I am happy that an emphasis on early detection and intervention will help spare many the struggles I went through earlier in life. Yet, I am frustrated that beyond talk of the ‘transition to adulthood,’ little is being said, much less done for adults, especially older adults on the spectrum, such as me.

My own situation highlights the issues: I was born in 1965, almost thirty years before most autism spectrum disorders (ASDs) were even recognized. There was thus no early evaluation based on suspicious signs, no correct diagnosis and no timely or otherwise appropriate intervention. I struggled with misdiagnoses and labels --- some rather hurtful --- frequently having my difficulties dismissed as representing lack of effort or something of that sort. My mother especially also struggled – struggled to get my problems taken seriously and identified for what they were. Struggled to find and get for me proper supports and other resources….. Even today, I make a living by jobs that aggravate my deficits while not making use of my assets --- despite an advanced college degree I worked long and hard to get.

The Task Force made a number of recommendations to the governor about such matters as:

1) Developing an early diagnosis and intervention strategy;
2) Reviewing state agencies and private organizations service and resource provision coordination;
3) Developing long-term recommendations regarding the education, integration, care, employment, and insurance coverage of persons with autism;
4) Developing strategies to increase community awareness of autism, with special attention to communities with evidenced economic need or health disparities;
5) Exploring methods of identifying and addressing quality of life concerns of individuals with autism and their families.
These recommendations were presented in April [2009], too late to influence bills before the Florida Legislature. However, some of the concerns expressed during discussions and topics found in the report were echoed by bills proposed during the regular session, although these largely were not passed. Nonetheless, the gathering of information and the expressions of ideas in a single document can serve to help bring about change in the future.

Task Force discussions were often thoughtful, sometimes passionate. The degree of consensus was remarkable considering the diversity of backgrounds and perspectives. My service on the Task Force helped make me aware of much in the “world” of autism that I knew little or nothing about, such as how truly controversial some of the issues are.

For example, the issue of vaccines: This is the debate over the inclusion of a mercury-based preservative in standard childhood vaccines. Before serving on the Task Force, I had actually considered the question to be a distraction from the issues related to autism with which I was concerned with. For me, the question of what causes autism was not as important as what needed to be done for those who have it. However, I began to see how important it was to other people and how bound up with other matters society is concerned with it really is. Why do we mix deadly poisons with life-saving serums?

The main problem at this point is the questions of funding for many of the additional and expanded services and other resources for individuals with ASDs and their families. Even the Task Force itself is affected, with fewer in-person meetings and more reliance on telephone conference calls, which are a challenge for me to participate in due to the demands of my job. Again, this highlights how much more needs to be brought into the discussion, not only by the Task Force, but the larger society as well. It all comes down to the ability of the individual to participate in that society – suitably employed, actively engaged….. Not all limitations are inherent in the so-called disability, much less the person.

I serve on the Task Force through my contact with Ari Ne’man, president of the Autistic Self Advocacy Network (ASAN). Mr. Ne’man had spoken at an early Task Force meeting and recommended me to Governor Crist. He and I knew each other from my finding ASAN while searching for resources to use as coordinator of the Tallahassee Autism Support Coalition (T* A* S* C*).

I personally started T* A* S* C* a little over five [six]years ago due to my own frustration finding support as an adult with an ASD. It is a frustration I still experience as I try to keep TASC going --- and growing. Resources are always less than the need. Although the weekly social get-together that T* A* S* C* started with has since been joined by a monthly support group and a monthly social activity, the amount of time and effort I especially must put into these as moderator, facilitator and organizer is so great that I have recently had to put the support group in hiatus and allow the social activity to be more of an occasional, than regular thing.

Nonetheless, I hope that these will continue in the long run and that past self-advocacy “training” efforts can be revived and a program called “Life With Principle,” based on the life and writings of Henry D. Thoreau, can get started. The problem here is that often in the past I was one person trying to make ‘it’ – whatever it was – happen.

I do not mean to slight the support and efforts of others, especially of my friend Paul McAuliffe, who started a sister social-support group under the T* A* S* C* umbrella in Panama City.

I am not sure which the greater contradiction is: trying to have an organized “group” of individuals with ASDs, being an individual with an ASD, trying to lead one! What I have had to do is to step back and scale down – giving myself a break and time for myself and not having too much in the way of expectations in general.

The problem for both me and for T* A* S* C* is to some extent, the nature of autism: People needing support, but not being very willing and/or able – depending on how you look at it – to give support. Someone once described what I am doing as “herding cats” – a very apt description, since cats are very individual, very much having needs and very much willing to accept help – on their terms – very independent, yet very dependent as well.

It is often said that some people with ASDs are not interested in other people. However, I wonder how much of that is only apparent…. How aware of other people and how aware of how aware of other people … they are may be more to the point. The most high-functioning individual with an ASD is affected by much the same issues as the lowest functioning, just not altogether the same way – even for themselves – at any given time!

However, if in the long run, both the Task Force and T* A* S* C* can have an impact – and I can have made some small contribution to that – I will be happy.