By Lisa Ackerman
When Temple Grandin’s life story was featured in a fantastic, academy award winning HBO movie the scene between the psychologist and Temple’s mom Eustacia made me cry for two reasons (1.) For one, it’s heartbreaking to hear the autism diagnosis followed by no cure, nothing you can do, and to consider institutionalization. The second reason; my family heard almost the identical story and prognosis 50 years later.
One would think that maybe after 50 years, progress would have been made in the delivery of a diagnosis. One would hope. Sadly, this same story plays out every week at TACA during support meetings, calls, and emails from hundreds of families each year.
While working at TACA for 12 years I’ve met thousands of families. The first time I meet them they are the definition of scared. Most of them have recently had a child diagnosed with autism. They look lost, fearful for their child’s future, and not wanting to accept the dismal prognosis. It doesn’t feel right to give up.
After seeing that same once lost family at TACA meetings, their follow up emails and run-ins at conferences and local health food stores, I see things about them change; for the better. They stand taller and feel more engaged. They found a new emotion; hope. Followed by actions they can take to help their kid. That hope fueled them to take positive steps forward.
While I agree hope needs to be followed by best practices along with help to get through the journey, not every family experiences the same results with every treatment and therapy. What I do know is that the last five years has generated a tremendous amount of new research and treatment options. Much has improved. Again, some more hope!
This leads me back to the tile of this blog. What’s with all the false pessimism at diagnosis? One TACA mom said it best to me “Hope gets me out of bed in the morning!” I’d prefer this TACA mom’s view versus some specialists view about no hope without a working crystal ball.
I rather live a life filled with hope even if it’s a small amount, even though my son takes back steps occasionally, and he still has delays between those of his typical peers and current skills. I choose hope. I celebrate his victories and help find answers for the rest. I accept and love him, working towards the goal of recovery and back pocket the goal of independence for my son.
The false pessimism theory is a different story. What purpose does it serve? How do we know what is in store for a very young child at the time of an autism diagnosis? How do we know what a child can be if we don’t try? What if there are some families that don’t wish to give up? What if these experts are wrong about no hope and no cure for many kids with an autism diagnosis?
What’s wonderful for a family is marching down the list of options which can be started at any time. Here are the resources for families:
- Blueprints: navigate your steps using best practices http://www.tacanow.org/family-resources/autism-journey-blueprints-guide/
- Mentors: obtain a free TACA mentor to help you along the way http://www.tacanow.org/about-taca/parent-mentors-guidelines/
- Live Chat: ask questions when you are stuck http://www.tacanow.org/about-taca/real-help-now-live-chat/
- Meetings: plug into your community for additional education and support http://www.tacanow.org/local-chapters/
- Everything on a budget http://www.tacanow.org/family-resources/autism-on-a-budget-series/
- Who pays for what? http://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
All these resources are free for families. TACA is building more tools based on the generosity of donors.
Another mom said something very inspirational to me “TACA makes hope a verb. Thanks!” I agree. Hope with help can be powerful, and can also lead to positive action. I am not sure what false pessimism leads to.
For autism awareness action month, watch the Temple Grandin HBO movie. It is a wonderful depiction of all facets of autism and she is a hero to many families. Then, for families living with autism, serve up a heaping portion of hope. There is work to do. TACA is here to help!