The Dream Of Independence

I was honored to have Amalia Starr as our guest this week on The Coffee Klatch.  Amalia speaks and advocates passionately about the right and journey to independence for people with Autism.  Parental fear for the ability of their children to live independent lives can be overwhelming.   These fears can inhibit their child’s chance for a productive and independent life.  The sleepless nights worrying about who will care for their child once they are gone is universal among virtually every parent I speak with. The message I got from this interview is that parents need to overcome their anxieties and foster independence.  This amazing woman has now started the Autism Independence Foundation which will help families and young adults with autism lead productive lives with a community of support.

Elise, one of the hosts of The Coffee Klatch who writes beautifully about her journey raising two sons with Aspergers Syndrome a form of Autism. wrote a blog post that truly upholds the message from that interview.  Elise writes of her first year college son’s evaluation with a recommendation for future studies and career direction.  Clearly what was interpreted from the evaluation and what is in Elise’ mind and heart are two completely different things.  The title of this post is “Dreams” http://t.co/pxn4hed   Her son dreams of a career in law, the evaluation reportedly finds that not to be a viable option and alternate recommendations are made. 

I often think about the reality of the situation that many parents are in.  I think about the endless efforts and complete dedication that parents tirelessly devote to their children.  I think about, very often, are we being realistic?  Are we deluding ourselves to believe that our children will take everything we have spent decades teaching them and apply it to create an independent, productive and most importantly, happy life. 

Constructing realistic goals for special needs children is essential.  Reality based decisions need to be made on level of impairment and acquired life skills, of this there is no doubt.  Setting unattainable goals for our children will only lead to disappointment and failure but regression as well.  Are we setting them up for failure?  Are our expectations too high? Are we wasting our time?

Time will tell.   Time will not only tell if a mothers heart and soul can prove more accurate than a scientifically researched evaluation report, but if there truly is any way of calculating determination.  I am not only referring to the determination of the parent but of the child or young adult as well.  How can courage, capability and human motivation be so easily measured?

The word dream has many definitions.  The ones I find most important are these:

A strongly desired goal or purpose

Something that fully satisfies a wish

Something notable for its beauty, excellence, or enjoyable quality

A visionary creation of the imagination

What is a life without a dream? What is a life without desired goals, purpose, wishes, beauty, enjoyment and visionary creations?  There is another definition of a dream: A state of mind marked by abstraction or release from reality.  Fair enough, but where would be today without the abstraction of release from reality?  What incredible advances would have never come to pass without these unrealistic dreams and visions for the future?

Who is anyone to take the dreams of these children and disregard decades of over coming adversity?  Who is anyone to take the dreams of these parents that devoted their lives to these children and in one fifteen minute conversation project the future?

These women are turning their fears and anxieties into determination.  They are well aware of the importance of balancing reality and dreams.  They are fully aware of the limitations as well as the competencies of their children. They are not allowing their children’s futures to be predestined.  As did the mother of Dr Temple Grandin, they are not letting autism define their children.   Their futures and their dreams are yet to unfold and no one can take that away from them. 

Autism Awareness Month - were you aware?

This month of April has been Autism Awareness Month.

For me it has been bitter sweet. On one hand, on a personal level it was a very productive and exciting month with amazing guests. We kicked off our Autism Awareness campaign with the most well known and inspiring of all autism advocates - Dr Temple Grandin. We brought you a young lady, Taylor Morris, who brought us into the "Other World" and stole our hearts. We are ending our month much like it began with an incredible author and advocate John Elder Robison. I have tried to spotlight every aspect of families and adults living on the spectrum while still featuring other amazing guests and Children's Foundations. Our quote for Autism Awareness Month on The Coffee Klatch - "With education will come compassion - its time"

The above, of course, was the sweet.

In interviewing many children's organizations and major foundations over the months I have been taken by the camaraderie and close knit communities that they have formed. The wearing of certain colors and ribbons to show support for many diseases and disorders shown brightly.

Where are the colors and ribbons and media attention for Autism? The color was blue. New York City did its part and on April 1st lit the Empire State Building top blue in honor of Autism Awareness month. I did see the beautiful brightly colored puzzle piece ribbon on many Twitter profiles. What I did not see was ONE person wearing a ribbon - selling a ribbon or sporting a ribbon bumper sticker.

Why?

After having The Christopher Reeve Foundation as my guest I began to think about it. Their global efforts and research sharing is bringing results and hope. They are a solid community.

What differentiates the two? Unity.

The divide is significant. On one hand, there is tremendous support and information sharing among both parents and affected adults. On the other hand there is hostility, disrespect and at times a complete lack of compassion for those not sharing the same view.

It is hard to wrap my brain around the complexity of it all. It is hard to not have compassion for all involved and all their efforts. It is also hard to express the devastation in the voices of the parents or the frustration of not being heard and part of the solution for the affected adults.

The views, opinions and convictions of our advocates are as vast and overwhelming as Autism itself. Perhaps it is in the continuum where the issues lie. Perhaps it is the frustration of so many different presentations and degrees in its symptomatology, causes and levels of ability that cause the divide. I am not sure. What I am sure of - it is not working.

Don't get me wrong - these are great people trying to do great things. These are great parents trying to raise great kids. It's all great - except for the unity.

The divide lies in your belief

Neurodiversity

Neurodiversity - atypical (neurodivergent) neurological wiring is viewed as a normal human difference that is to be tolerated and respected as much as any other human difference. - Gregor Wolbring

Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind. - Harvey Blume

Neurodiversity The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood. - Mike Stanton

Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view. Baron-Cohen said:

I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a 'cure for autism' is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special - such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth - would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.

The "Cure"

The search for the cure. Those searching for the cause through environmental or genetic research in hope of a cure for autism.

The "Cure - "the perspective that autism is caused by environmental factors like vaccines and pollution and could be cured by addressing environmental causes". - Andrew Solomon

For the parent with a child that is nonverbal - self injurious - has complete inability to communicate or interact with other people - loses previously acquired ability to say words or sentences - have continuous need to performs repetitive movements, such as rocking, spinning or hand-flapping or are oblivious to pain yet cannot tolerate the gentleness of a mothers touch - Can you blame them?

There are wonderful Autism organizations doing amazing research and finding the links and genetics attributed to Autism. They give hope - they know Autism is not going away. They are looking for the pieces to the puzzle as it is not a matter of putting them in the right place but of first finding them.

Until then, many parents will be desperate for a cure. The lack of protocol has led to parents seeking unsubstantiated therapies and treatments. Some argue that certain therapies and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that alternative treatments like chelation are dangerous.

And lastly,

The Elimination of Autism - The search for use of prenatal genetic testing through a genome project. Some are concerned that the "ultimate cure" will be a genetic test to prevent autistic children from being born and that most fetuses with autism would be aborted if prenatal tests for autism are developed.

Excerpts from a wonderful article by Spencer Hatton:

"There's nothing worse than seeing a desperate parent, raising a child with autism, believe a cure is at hand.

But in the world of autism, disappointment quickly follows hope as cures vanish, wasting precious time and money.

I know. I was one of those parents".

So - what is the answer? Well if you listen to Dr Temple Grandin - it is early intervention - one on one early intervention is the most important accommodation for a child. This one on one should encompass many different forms of OT, play and behavioral therapies. Modeling - exposure to new things - a proactive approach to sensory issues. The understanding that many skills are not naturally acquired and may take a long time to obtain even if not mastered.

In my mind - the answer is acceptance. Accepting the vast differences in severity and ability and lifestyle. Accepting that there is no "one" cause and there will be no "one" treatment. Accepting that it is time to stop holding on so tight to your beliefs that you impede the goal. Accept that 1 in 110 (conservative figure) children will be given a diagnosis of autism on some end of the spectrum and that is a HUGE population. Accept that Autism does not go away - you do not grow out of it - our upcoming adult generation will have a significant autistic population.

Accept that our world is a better place due to the amazing Aspies that have brought our technology and science fields to the forefront of the world. Accept that not everyone needs or WANTS treatment. Autism for many is a gift - a true gift that they would not trade for anything in the world. Start paying attention to the people around you - start reading some of the amazing novels and enlightening books written by people on the spectrum.

Read "Look me in the eye" by John Elder Robison and be inspired by this man's story. In it you will find insight into the painful memories of a childhood of an undiagnosed boy and the struggles to "fit in" and how time, personal growth and a communities acceptence made this aspergian whole.

Accept that there are parents seeing horrendous suffering and want desperately a cure. Accept that a mother should be able to hold her child and kiss her child without causing pain.

I call for a show of unity within the Autism community both by those affected, those with children and mostly, the prominent Autism Advocacy organizations.

It's time.