When Autism Recovery Doesn’t Happen: My Son Is 18, Autistic, and Not Recovered

June 9, 2016

greenbeangirlAutism recovery is a hot-button issue. Using this term could get you any number of reactions. Some people have never heard of the idea that someone could recover from autism and are intrigued. Others argue there is no way this is possible and immediately close their minds. Most want it. Some have achieved it. And still some are completely offended by it.

True recovery from autism means different things to different people. Each gain or milestone met is a step toward recovery. Among the believers, there is a division over what truly denotes a recovered autistic child.

For some, the goal is losing the diagnosis, and for others it is being indistinguishable from their peers. This sometimes happens in months, but is more likely to be years . . . and many continue to travel slowly down recovery road.

What does recovery mean to those of us whose children have become adults? Are we failures? Have we been shunned by our communities? Are we met with “I-told-you-so’s”?

Tristen's Class

I spend a lot of my life in reflection, and my son Tristen’s graduation from high school brought about many existential thoughts.

What has brought us to this point in life?

In life there are a series of lines. Some are starting lines, and some are finish lines.

Graduating high school, for my son, is a mixture of both.

Working for the past nine years at recovery using biomedical and homeopathic interventions, I thought this finishing line would look different. My dreams were to have my son at the same, or very close to the same, academic level as his peers. My hopes were that his speech would be more clear and also his comprehension.

At age 18 this goal has not been met, despite the tireless effort of those around him who love him most, selflessly devoting time and energy just to see the slightest improvements.

So this finish line could look like a last-place defeat to onlookers.

We ran hard and tried our best, but our best just wasn’t good enough. Here’s a sigh, a pat on the back and a participation ribbon.

So why did we even bother to enter the race?

I look at the race a bit differently.

Just because we aren’t where we thought we would be, doesn’t mean we have failed, and it most certainly does not mean we are giving up.

Just like the muscles used to run a race become stronger and the mind disciplined, progress and growth have occurred despite the overall outcome.

It was WORTH it. It was worth the hard work and effort because we are stronger than we were when we started. That is progress. That is winning.

Tristen

My son’s high school graduation, is a finishing line, yes. It symbolizes the end of an era of pouring our hearts into teaching him the way he learns best. We have completed the hours of schooling required. But more positively, we are putting an end to the pressure. As a parent of a child with special needs, who is also homeschooling, I felt an enormous amount of pressure of the task put before me to teach my son. I knew people were watching . . . some judging and some cheering. For me, this finishing line represents leaving the restrictive and obligatory learning of the past and moving on! This finish line is now the starting line to our future. And we don’t have to run it! We can take our time and learn in a more organic fashion. The opportunities are abundant and the possibilities endless.

I look forward to the next part of our journey, whether Tristen is recovered now or not. Life is about more than chasing down perfection. Missing out on the silver linings in life is not on my to-do list. Whether we get there in five years, 25 years, or never is no reflection on my parenting, my ability to teach, or on the validity of recovery.

Recovery happens, and it doesn’t happen; there are no guarantees. So I’m looking forward to a fulfilling life with my son, one of laughter and love and service and progress. He will never stop learning. Life is what you make of it. Here’s to the next race!

~ Green Bean Girl

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8 Responses to When Autism Recovery Doesn’t Happen: My Son Is 18, Autistic, and Not Recovered

  1. Peg Pickering says:

    We, too, have lived this journey. Mit is MUCH improved thanks to YEARS of biomedical interventions, but still a very, very long way from recovered. We left ‘high school’ at 18 as they were not even attempting to teach him….and have begun navigating the ‘adult’ system.

    At 20, Mit is still totally non-verbal….and still severely impacted. That said, he is a content young man who requires NO prescription medications, is NOT aggressive and continues to grow and learn. He even has a part-time job at a local grocery store where he, with a job coach, stocks shelves, runs the box crusher, cleans freezer doors, and collects carts from the parking lot. He IS making a contribution…..and living a life with purpose.

    He willingly continues to take his supplements and participates in household chores and has learned to cook several meals. Soon he will start his own business, MIT at Your Service…..shredding documents, making deliveries, etc, in addition to his job at the local Save a Lot.

    He will always require supervision…..and I’m preparing to build a village of ‘tiny houses’ on our property for a community for individuals who need help…as well as homeless veterans who need to be needed.

    This is NOT the ‘outcome’ we had hoped for when we started this autism journey 19 years ago, but I am grateful for every skill learned….every step forward.

    I am proud of my son…..and the man he is becoming.

  2. J says:

    I urge homeschoolers to consider unschooling their autistic children. Don’t wait for the diploma to start truly living.

  3. April Boden says:

    This is a very simple yet beautiful and moving article. Green Bean Girl’s writing has a quiet power. She doesn’t appear to be considered with the labels put upon her child but rather the child… or shall I say man himself. Autism is merely a label as is recovery… neither of which could encapsulate the value of Tristen. He is blessed to have such a powerful yet gentle and loving mother.

  4. carlyn says:

    A beautiful article. I am very, very, grateful that biomedical interventions happened to be able to mostly recover my son. I do not judge those who did not have the bandwidth to try, or those who tried and it didn’t work. And anyone who does is wrong. We should have more compassion than anyone! By definition, if you have a more severe child, you have more to deal with, and you have less energy and funds to put toward biomedical recovery. And you have more to recover. Just for starters. I had one child, and I had him late enough in life that I could afford to make this my full time job for 5 years. Even so, it is impossible to predict what injured which autistic child which way. We don’t have identical twins to use as controls, and we will never know what did and didn’t work because we generally do multiple interventions at once, from boomed, to ABA, to OT to HBOT to diet. I don’t know why a certain intervention helped my son not my dear friend’s son. But it breaks my heart that it did not help her son. And I advocate for those parents who cannot leave the house. I advocate for those parents still isolated at home with a child who is not stable. And I advocate for those with wonderful kids who are stable but may not ever be fully independent. I don’t know how far along my child will be on that path. I won’t know for another 5 years, but so far it looks as if have had a different path. I send every single autism, PDD, special needs parent or loved one only admiration and love and wishes for the best possible outcomes. I wrote this poem when he was 8 about the struggle http://www.ageofautism/2008/07/autism-twins.html

  5. Kathy says:

    Thank you for sharing. It is difficult for us to be transparent sometimes. We open ourselves up to criticism and suggestions, neither of which is always helpful! But others do care and we all have our burdens. I don’t mean our imperfect children but our unfulfilled hopes and dreams. We all need to find that sweet spot where we can settle into our ‘new normal’ and just enjoy the life we were given. God is good even when our lives aren’t perfect.

  6. Stephanie Mauck says:

    Love this perspective. Thanks for sharing the journey and Tristen with so many. I am blessed to have been with you on this biomedical path. As you know, every day is a new day. God’s blessings to all of you. Tristen and your family have a bright future full of hope.

  7. Tina says:

    Thank you for your article Green Bean Girl. I recently helped a 19 year old with Asperger’s with wonderful and life changing results using shamanic healings, and they were all distant healings too. I know you are not chasing down perfection, but I would be happy to speak to you if you would like further information – http://www.goldenhealings.com
    Blessings, Tina

  8. Race says:

    Your “story” really touched my heart. Thank you

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