Can We Change the Future for Autistic Adults?

Most research on autism is performed on children.  The key areas where intervention occurs with children are in behavioral and educational functioning.  In these focused therapies, with children, there is undoubtedly marked improvement over time.   During adolescence or adulthood, mental health issues, such as anxiety and depression can worsen, even while the other issues of autism can become much more improved. Their needs will continue even if their other needs lessen. In some cases, those needs from childhood continue, dependent on their level of functioning.  Many autistic adults will need assistance regardless of the progress they make. 

It is so apparent that there is not much focus on the aging population of autism in our communities, support legally and legislatively for autistic adults, as there is for children.  Frequently, especially with those in the under-served low-income families, there is no support system in place. Even in the middle to upper class families, parents may die without having concrete plans in place because society doesn't have much to offer. The autistic adult can't function as well, if at all, in our world.   They are now dependent on others for aid that will not care to the extent their parents did. Consequently, they are at the mercy of a society that seems to not care as there is no real system in place. In a country where everyone's rights are supposed to be protected, their needs will not be met. Don't we still have a moral obligation to see that this occurs?

Making services available is ethically our responsibility as a civilized society for individuals that can’t provide for themselves. Everyone in our country is entitled to quality of life and this class of people should not be excluded. If you talk to parents and families of children with autism, this is by far one of their greatest worries, what happens to my child when they grow up, when we are gone? 

Some individuals with autism are unable to communicate well and many can’t communicate at all, especially when under stress and anxiety.  Assessment of their needs be it health, mental,  financial, living arrangements, basic care and feeding, should be assessed and  addressed routinely.  If employment can be provided for high functioning adults, this should be coordinated or assistance should be offered so they are contributing to their own well-being, as self-sufficient as possible.

One viable solution is to form Autism planning groups known as APG. Having read about this concept, it seems to be one of the best proactive ideas to date.  These would be committees comprised of concerned individuals from all areas of the community, including healthcare providers, business representatives, religious leaders,general population people, educators,  etc,  to formulate solutions, concrete development schedules, sites and financial backing.    

The purpose of the APGs again, would be to address the growing population of autistic adults’ future health and social needs. By starting the process of beginning training programs for care workers including volunteers for diagnosed, autistic adults of varying functioning levels to thrive at their level, the plan would be in place. Facilities could be built for living arrangements, job training programs could be established with connections to businesses willing to help, and  all the various factors and variables addressed.  The cost of a program in place would actually be far less than the current cost of having no system in place, especially when taken into account the huge growing number of autistic individuals in our country. 

Programs in place to address our growing population of autistic adults within communities would mainstream their needs  and make it  more of a seamless transition.  This will decrease stress to both the individuals, the families and the care providers. Furthermore, solutions will lessen the financial and emotional burden to communities.  It may also provide jobs, not just for the high-functioning autistic adults but those working in these types of programs.   Ultimately the end goal will be met, to provide and give this segment of the population the quality of life they deserve.

Consider that 3.5 Million Americans live with some degree of the autism spectrum currently according to the Autism Society Organization.   According to Advancing Future of Adults with Autism, the anticipation of an incredibly large population of autistic adults is increasingly being called  the "autism Tsunami" .  The economic cost of not having a working system in place is staggering dollar figures. In 2002, it was estimated to be  $126 Billion annually - it tripled by 2006.  And we live in a nation with an increasing debt continually facing cutbacks. This issue has to be addressed and quickly. 

If you are kidding yourself thinking you do not have a personal stake in this issue, caring for autistic adults in the future, because you do not have an autistic child, grandchild, niece, nephew, neighbor, you are wrong. We will all pay for these needs. And every challenge has a fix.  

Delivery of training, assessment, specialists to provide services, housing, drop-in advice, job placement assistance, is possible. It needs focus groups devoted to creating solutions. Consider lending your hand and pushing for your leaders to put this topic on their agenda this year. Quit eluding the autism Tsunami.” Solutions are needed and we must be proactive and not retroactive. Funding and focus is needed. The time is now or your conscious may be at stake.  Yes all lives do matter! Speak loudly, even louder, for those that cannot. 

Johnny Dean's Story

Dean McIntosch, Personal Statement, Adult w/Autism, UK

The Gift of an Autistic Adult Son

It was a long Saturday night at work.  I needed a break and headed over to the coffee stand to get a chai tea.  As I waited for my drink, a woman caught my eye. She was sitting nearby on a bench with her arm around a young man. He was good looking, appeared very shy and had headphones on. Something about him struck me as very different, for starters, he kept his hand downward and seemed to smile a great deal, something I seldom see young people his age do.  

His mother, I presumed, had her arm over his shoulder was lightly rubbing his shoulders with her hands and occasionally bending over whispering something in his ears.   As I glanced over and caught her eye, we exchanged smiles.  Once I got my drink, I went over and asked her about the headphones as they looked quite different to me, larger than normal I thought. It was then she told me that they were a special pair, to reduce sound because her son is autistic and has issues with auditory stimulation. Too much noise over stimulates him so they put those on when in public to cut the noise level down to decrease the incidence of outbursts.  

I told her I had young grandchildren that were autistic and found them to be extremely loving children. She began to tell me the story of her son.  He was her second child. She had been a kindergarten teacher when he was born four years after his brother.   He seemed to be behind early on but she assumed he would catch on and catch up eventually. Once he started in school, he was considered more of a problem child as he was given to fits and being somewhat violent out of frustration and diagnosed with autism at that point. He was removed from public schools as she quickly learned they were not the best equipped, in her opinion, to deal with her son’s needs.   She quit her job and devoted much of her time to getting him into special therapy and classes for autistic children.  

He is now 22 years old, operates at about the age of a three year old and is the one of the biggest joys of their family’s lives.   He is extremely affectionate and asks for nothing in return.   He speaks but is limited in his vocabulary.  The most important thing to a mother and father he can say though, communicate his basic needs.    

He has his  odd idiosyncrasies but that is what helps make him special and unique. For example, he enjoys picking up trash so while we were talking, off he went in a circle picking up some trash some loiters had left on the carpet around us.   His mother watched him all the while with a smile on her face and said she has learned to find his little tasks like this endearing.  There is no use in telling him that the cleanup crews will clean up the pieces of paper he is picking off the carpet.  He derives so much happiness in doing so that to interrupt him would only cause him anxiety and sadness.   If they don’t watch him at home, he enjoys talking all of the toilet paper off of the rolls and the paper towel rolls as well!  These types of things are part of the humor and joy of living with autism.

He cannot tie his shoes but he can wave at people when they address him, and at times, he does. His mother said she was not sure how he would react to me but I could try to say hello to him.   He kept looking my way and smiling so I slowly looked at him and made eye contact a few times. Then I knelt down being careful not to get too close and lightly put my hand on his back right by his mother’s hand, smiled and said hello.  He stared down at the floor, smiled real big and said hello back.  For an autistic person, this is wonderful, this is a welcome, and I was so pleased he accepted me. I told him it was a pleasure to meet him and meant it!  That exchange meant my day,  he was just a sweet young man.

His mother’s story did not end with her son.   This Thanksgiving season has more in store for her family. As she sat there on that bench, so peaceful and full of joy, beneath the surface, she is praying reverently for a miracle.  

I hope those of you reading this will too.  You see, as she sat there, hanging on to her son closely, as if the two of them were the only two people in the world, her world could get quite a bit smaller indeed.

Her husband and her only other son, 26 years old has both been diagnosed with Stage 4 colon cancer. She went on to elaborate and tell me the prognosis is not good and everyone at the church is praying for some sort of miracle. She knows in her heart they will be healed.  However, she is not sure it will be done on earth, as it is looking more likely it will be healing in heaven.  She is accepting God’s plan with the grace she accepted her autistic son twenty two years ago.  They were only at the mall today because both men were having a good day and wanted to get out.  She sat there telling me that she was so grateful that she had her son because one day he may be all she has and she would need him as much as he needs her. 

I told her I would share her story.  Thus, I am.   I believe her faith is beautiful and shows the light of God.   I believe that is partially why her son’s smile is so bright.   I told her of my young grandsons and she offered words of wisdom.  I hope you, that are reading this, will find the time to reach out to this stranger in prayer.  

There is no way I could hear this story and not reflect on my two grandsons, Ty and Jake.  Her son was so good looking and really looked like any other twenty two year old. For some reason, I sensed he was autistic but yet there was nothing about him to clue me into it directly. The woman told me that once you have been around autism you seem to have a keener sense of those that possibly have it than others do.   I believe I met her for a reason.   She was truly inspirational and she loved hearing about our family’s Jake and Ty. 

I also believe, if you think of this woman’s story this Thanksgiving, you will realize you too have a lot to be thankful for and to be smiling about. The image of her, the loving mother,  on that bench with her devoted innocent son sitting next to her wanting nothing but his mother’s unconditional love was precious.  In a world full of unsatisfied wants and needs that seem to be endless, it is refreshing to see quiet acceptance and embracing of what some see as a difficult situation.  Who would imagine  themselves in this situation and sitting anywhere happy and at peace?

May we stop for a moment in our tracks and reflect on what we truly do have. May we rejoice in those gifts.  And last, but certainly not least, bless you for what you bring to God’s kingdom, your uniqueness and the light you shine.  May it continue to shine on earth till our true King calls you home.  

Updated video on Ty Ryan & Jake James Glasmeier Below :