Living With Autism: When Our Kids Become Adults

As Neal celebrates his 16th birthday, I am met with the realities of parenting a child with severe autism. Neal will always need me to care for him.

Yes, he has come so far in his development. At one time too frightened to even leave the house due to sensory overload; he now loves going on adrenalin-producing amusement park rides. On the day he turned 16, he rode a roller coaster and requested going on "Soaring Over California" three times in a row (much to my weak stomach's chagrin!) For the most part, Neal has chosen to leave the isolation of his inner world of autism behind and become part of this brave new world. Much of his story and how we got there is chronicled in my soon to be released memoir, Now I See the Moon www.nowiseethemoon.com (HarperCollins)

As Neal ages, I must help to create his world. But what options are out there for him? How can this tall, lanky teen whose thoughts and feelings are the same of any teenage boy (asking "when do we eat?" and flirting with cute girls) be part of a world that doesn't completely understand autism?

This is especially true with nonverbal autistics. There are still lots of folks out there who believe that just because someone cannot speak, they do not hear or think. And Neal, bless his soul, can still go into tantrum mode if his schedule is upset or an unexpected noise startles him.

I've accepted that he will always need some kind of companion to help him navigate his adult world. But where will he live? Where will he work? Will he marry? Have children? Go on dates?
What will happen to him after I pass?

Fortunately, I am not alone with my uncertainty. I've been going to conferences, becoming part of committees like the Jewish Federation Special Needs Task Force on Housing, and the Senate Select Committee on Autism, and everyone is asking the same question: "What happens when our kids become adults?" With a ratio of 1 of 110 folks having autism, and this number growing, we must find answers.

Answers come in surprising ways. I've just been privy to a new book which gives parents a road map to help their kids with autism navigate the real world, with tips on what to do when they become adults. Sixteen of the world's most renowned autism experts united to give parents those answers and there are pearls of wisdom in every chapter. Authors include Dr. Temple Grandin, Bill Davis, Karen Simmons, Keri Bowers, Eric Chessen, Stephen Shore and Pat Wyman.

I haven't read the book yet, but I'm going to order my copy today. Autism Tomorrow: The Complete Guide To Help Your Child Thrive In The Real World are now available for giveaway as long as they last, at www.AutismTomorrow.com.

Let me know your thoughts after you get yours. And let's keep this dialogue going. I'd love to hear what you are planning for your adult child. Together we can create a more compassionate, accessible world.

In joy,
Elaine Hall "CoachE"
Author, Now I See the Moon: a mother, a son, a miracle
www.nowiseethemoon.com
Founder, The Miracle Project

 

 

 

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Comments

[Elaine Hall]

07:35 PM on 06/18/2010

Dear friends,
Since I wrote this original post, I have found out that the book, Autism Tomorrow, is not free, but offered at a reduced cost. Let me know what you think of it and I will post.
Elaine

BTW - My first book, Now I See the Moon: a mother, a son, a miracle is due in the book stores, June 30th! www.nowiseethemoon.com

[TrnsNtnl]

02:21 AM on 06/12/2010

I hope there is a chapter in there on successfully obtaining a job while on the spectrum... What about us young adult throw aways? No one wants to hire a kid on the spectrum or even believe you are on the spectrum unless you are nonverbal or physically asymptomatic. Professors at school wont discuss it, special ed wont acknowledge it, wont prepare people. Adults are too busy working to be able to support their own flesh and blood. Its a ridiculous grind. Our social net was ravaged by our lifestyles and we are feeling the hurt in too many ways to count.

[Elaine Hall]

07:38 PM on 06/18/2010

I hope and pray that all communities will embrace the talents and abilities of everyone.
I am saddened that anyone has to feel judged or marginalized in any way.
You may enjoy reading the author, Stephen Shore http://www.autismasperger.net/ who is an adult with autism and a professor at Adelphi University.
Many blessings to you,
Elaine

[calamityjohn]

10:54 PM on 06/05/2010

When I lost my job we did a great deal of research .. especially at the Coleman Institute: https://www.cu.edu/ColemanInstitute/stateofthestates/

we were astonished at the wide variation at state services available for those on the nonverbal area of the spectrum ... we ended up in Minnesota .. our son is now 17 .. about to move into a group home a few blocks from us .. things have not been perfect but his state services have multiplied by a factor of 5 from the untenable situation we were in. He will always need family not just to love him but to care and supervise care .. you are right .. some of the most important and difficult decisions in all of our lives .. good luck and take care.

John

[Elaine Hall]

07:40 PM on 06/18/2010

Thank you, John for your experience, strength and hope. I would love to know about the programs in Minnesota so that we can perhaps recreate here in California. For nonverbals, there is very little programming on the west coast that acknowledges their abilities and gifts.
Thank you,
Many blessings,
Elaine

[TannersDad]

12:24 PM on 06/03/2010

Thank you for this post. It is amazing to me after the news that this subject is going to have more impact on society than the Baby Boomers aging out, that we still have seen little movement to prepare. I know many stakeholders are getting agitated. I attended the AFAA Meeting in Chicago... Advancing Futures for Adults with Autism. Many of the participating professionals were worried about things on so many levels. Housing, Employment, Quality of life, and safety seemed to be on the front burners for these leaders. It seems though that the Medical establishment and our Government has yet to have the light go on... We all are concerned about Restraint Seclusion Abuse & Bullies... Well our own leadership is heading down this path... You do not wake up one day and magically have facilities, Trained personnel, & Resources to deal with such a surge. More effort & Energy is being spent on getting classes for Wind Turbine Technicians at Community Colleges than is being used to get a handle on this issue TannersDad Tim http://www.causecast.org/member/tanners-dad

[TrnsNtnl]

02:05 AM on 06/12/2010

Thanks for all your doing and what you said but I must say as an adult on the spectrum I think the wind turbine technician classes are just as important as the help deserved by so many on the spectrum at the state level. I know unemployed adults on the spectrum motivated by those courses not to mention a transition to "green energy" might even see us cap off and start reversing our harmful industro-chemical degradation of our environment which is largely responsible for the wave of add/autism/aspergers births in post industrialized societies. Considering the wave as a bioevolutionary response to an inclusive interpretation of environmental factors in a organisms life, one might see the need for both good state care and the wind turbine courses. At least I would hope. We need to think longer term about this issue. We are coevolutionary products of our environment and if we are going to change anything long term we need alternative cleaner technologies neurodiversity awareness.

[Elaine Hall]

07:43 PM on 06/18/2010

Yes, yes. I believe that people with autism are going to help evolve our world to be a better place. Thank you for your post.
Elaine

[Elaine Hall]

07:42 PM on 06/18/2010

Yes, change does take time. Thank you for all that you do to help so many. I read your posts and twitters. It is because of pioneers like you that help to make change possible.
With so many children growing up to be adults with autism, the "typical" culture will surely have to be more open.
Elaine

[Em Steinau]

10:05 AM on 06/02/2010

The book is 9.37 - not free

[Elaine Hall]

12:41 PM on 06/02/2010

Thank you. Good to know. :)