Aaron Likens: I was asked to write a blog post on Independent Living, and I have asked my father to write about his experience of seeing me move out of his house in 2012. Wow, that was a long time ago. This is his first adventure into writing a blog post. Be kind.

Independent Living

by James Likens

Many times, when I would attend presentations about Autism Spectrum Disorders given by my son, Aaron Likens, parents would often ask me what the most important piece of advice I could give them about their child(ren) on the Autism Spectrum. I don’t know if I was right or wrong, but most of the time I would say “accommodation”.

A child on the spectrum, regardless of age, has things that he or she can do quite well. It might be a subject in school, an activity, or an unbelievable knowledge base on some subject. But there are also things that, if not very difficult, can be downright impossible. I could write a long litany of things, but to quote Aaron at his presentations, “If you’ve met one person with Autism, you’ve only met one person with Autism.”

In the past eleven years, Aaron has given over 1,000 presentations to nearly 100,000 people.

Those include parents, teachers, students, professionals, police officers, and FBI agents. Whether he is standing on a stage, in a classroom, or sitting next to someone on an airplane, people have often said, “If you hadn’t told me you had Asperger’s syndrome, I never would have believed it.” This is something that he does very well.

I read a synopsis of a study about ASD young adults done by Drexel University, Philadelphia, PA, that said the following:

In the U.S., 66% of young adults in their 20s live independently,1 meaning outside of the parent’s home and not in a supervised living situation such as a group home. Our own analysis of young adults with autism indicated that only one in five of those with autism have ever lived independently since leaving high school.2

Those figures cover the entire Autism Spectrum. For those on the higher end of the spectrum, 45% have lived independently at some point in time. Aaron has lived outside of my home since his late 20s.

His former employer had moved to Texas from St. Louis and said he would rent Aaron his condo at half the price of what rent was in the complex. After discussing it with me, Aaron took him up on the offer. He has not lived with me since.

Is he independent? Yes and no. Like I said, there are some things that Aaron is amazing at, and there are others that are very difficult, if not impossible. That’s where my advice to that father comes in: accommodation.

I knew even before Aaron moved into that condo that there were things that I would have to help him with, if not do them myself. For instance, Aaron has had a cell phone for more than a decade. He still hasn’t set up his voice mail because he’s afraid it will be bad news. He has booked hundreds of airline tickets all over the world on-line, but if he needs to change a flight or there is a problem, he can’t call Delta to deal with it. There are other things that present him with a problem, but most of them have to do with communication. That’s where I help out with accomodation, speaking on his behalf. It’s not that he is a failure, it’s that he has a disability.

On the other hand, Aaron has traveled to 10 foreign countries, on his own, and navigated airports, custom, taxis, trains, subways, and walking. He has made his own hotel reservations (on-line), rented cars, driven in foreign countries, and found his way back when he got lost. He’s a professional race flagman for a national go-kart series, and part of the flag team for IndyCar and the Indy 500. He travels up to 20 weeks a month for his motorsports engagements.

I think it is important to let a young person on the spectrum know that the parent(s) will be there for them, to help out when they can’t help themself, without a lecture that they should learn how to do those things. That safety net can be the difference between living independently or living at home.

Today Aaron owns a condo, lives with his cat Kansas, and continues to bring hope to families across the United States and around the world. That’s worth whatever accommodation it takes.

1. Arnett J. (2014). Clark University Poll. Clark University. www.clarku.edu/clark-poll-emerging-adults

2. drexel.edu/~/media/Files/autismoutcomes/publications/LCO Fact Sheet Living Arrangements.ashx

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Third in a Blog Series: Understanding Autism with Easterseals Ambassador Aaron Likens

I wouldn’t have thought this when I began my speaking career but one of the first audiences I spoke to were doctor’s offices across Saint Louis in 2010. I thought this would be a waste of time, but I was surprised with the lack of basic understanding of the autism spectrum that doctors and their nurses had. Even though Asperger’s Syndrome had been in the DSM (Diagnostic and Statistical Manual of Mental Disorders) for 16 years, I was somewhat surprised at their lack of awareness.

This is another area that means a lot to me because my journey, as a human, was actually shaped by a doctor that had no idea what Asperger’s meant back in 2003 when I was diagnosed. He referred me to get a diagnostic test and a couple weeks later when I went back to him he told me, “Yeah, this says you have Asperger’s. I don’t know what to say, um, good luck?”

Good… Luck… What did this thing I have mean? I had no idea and had to look it up on the internet. I found bad information and I gave up for 15 months. It doesn’t need to be this way though and in 2019 I spent a lot of time presenting to many doctor’s offices and hospitals in and around Los Angeles and in nine years I can say we have come so far.

When I present to this sort of audience I provide a brisk presentation simply covering the 5 most important statements about autism, along with a little background of myself and then it’s all Q&A. I now know they have a base reference about the autism spectrum unlike 2010 and the questions, oh my, they’re good. The thirst for knowledge I’ve found is so great that it’s simply thrilling when I get to present to them because they’re thirst is such that they can properly interact and better treat patients that may not fully be able to verbally describe what is going on.

I’m curious if, in another decade, a presentation to health care workers will even be needed. For now it is because we aren’t at that 100% understanding and awareness and I still hear, not as frequently mind you, stories from families that have a doctor that just refuses to acknowledge that autism is a problem or even exists. “It’s just a delay” or “They’ll grow out of it” are two frequent sentences parents say they hear. And, I’ve heard some horrifying ways some doctors try to diagnosis it (I’m sorry, but if a child can or cannot throw or catch a ball is not a proper way to diagnose and Autism Spectrum Disorder) but with each passing year these stories keep decreasing and I can only hope it keeps going that way until this is simply a thing we remember on how things used to be.

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Second in a Blog Series: Understanding Autism with Easterseals Ambassador Aaron Likens

I can think back on my life and pinpoint exact things my teachers did that, if they hadn’t, I wouldn’t be doing what I’m doing today. They did it by intuition only because there wasn’t autism training, awareness, and Asperger’s was still a couple years away from being put in the DSM and yet they made an incredibly shy and unconfident elementary kid have a chance. Here’s the thing, and this can bring me to tears, they planted seeds so to speak and never got to see the amazing harvest to come.

Educators have a job few can comprehend as they truly hold the future in their rooms each and every school day. What can seem like an insignificant moment can be a life-changing event. For myself, this was in second grade. I loved auto racing, and still do, and it was the only thing I talked about and by my second-grade teacher, Mrs. Jendra, asking me, “Aaron, where is Formula 1 racing this weekend?” I said, “Silverstone.” And she fired back, “Aaron, where is Silverstone?” and I had to think. What had the announcer said about the race prior? I finally remembered and answered, “England” to which she immediately fired back, “Where’s England?” and with that my love of the world and ability to see more than what’s right in my environment was born.

Teachers will have students on the spectrum and they may not know it. It’s not a matter of if but when and how many. Some will take things literally, some may not understand humor, and some may be a true genius. It’s a spectrum and that’s the race we have on hand for teachers. There is no one size fits all answer. I wish I could tell you there were, but what works for one student may have an adverse effect on the next, but the more information and understanding our teachers have the better options and tactics the teacher will be able to be used.

For teachers having the solemn duty of serving the youth and leaving a footprint beyond what people conceive of on a typical day, the more we can supply them with information on the autism spectrum so the minds on the autism spectrum may flourish much more than if that student had remained stagnant. There is so much human potential in each person on the spectrum and every day I think back to what Mrs. Jendra did and that I am who I am by just one simple, seemingly irrelevant question.

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First in a Blog Series: Understanding Autism with Easterseals Ambassador Aaron Likens

I’ve been in this race for understanding for over a decade and I’ve seen so many amazing strides in the past decade. However, just as a driver in a race with a lead, there can be no let-up on the pace. We must keep going and racing because each day a parent out there, somewhere out there, will have an issue in public and may require help, or perhaps confronted by an employee of a store.

A great example of this is several years ago I was on a flight and as we pulled away from the gate a young girl, maybe 4 or so, was not fully in her seat. The flight attendant came rushing and told the mom that all passengers needed to be in their seat with their seat belts fastened. The girl began to scream when the mom told her she had to sit in her own seat. The flight attendant double downed and said, “Ma’am, she must have a seat belt on! She’s too old to be an infant in arms.” The girl clung onto her mom with a firm grasp and the flight attendant raised her voice and said, “FAA regulations stipulate” and then she looked at the girl again and the flight attendant went from an authority figure to a person with a compassionate voice and she leaned towards the mother and simply asked, “Autism?”

The mom, whose face I could not see, didn’t say a word but simply nodded. The flight attendant tilted her head for a moment and then rushed to the back of the plane. When she returned she brought with her several seat belt extenders. Now, I don’t know if this was exactly up to FAA regulations, by connecting the seat belts together the mom was holding her daughter while the daughter was strapped by the belts in the seat beside her.

The previous story… did you hear about this on the news? Was there an award given? No, and maybe even the flight attendant doesn’t remember this story now. However, what would this have looked like had the plane had to turn around and the mother and daughter were removed from the plane? Then it would easily be findable with a quick Google search and both the mother and daughter may have been traumatized for life.

The race for awareness and understanding, its essence, is in the story on that plane. This shouldn’t be something to witness and be astounded by but rather should be expected. I hope we can get to that point in our lifetime, but this is going to be an ongoing race with no set distance of the length of this race.

This, of course, isn’t to say that we should allow a dangerous situation as in now having someone buckled into a seat, but finding a compromise and understanding that, in that moment as the pressure in the cabin changed and all sorts of new noises were bombarding that four year old’s senses, that she quite simply was not going to be able to sit without being held. Well, this race is one of kindness, understanding, compromise, and for any company out there training and education are of the utmost importance because they can scar a family for life and forever henceforth have their misunderstanding easily findable on Google. Sadly, there will be no award for their work.

There won’t be a day under the sun for the unsung heroes that go out of their way to solve a problem that may arise, but those that achieve the highest ranks in this race may or may not know that they are part of a collective movement that I hope will one day lead the world to be as accommodating and safe for every person on the autism spectrum to live, work, and play.

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Affecting about 206,000 Americans, Down syndrome is the most common chromosomal condition. Although it can lead to higher risks of congenital cardiac issues, autoimmune diseases, and Alzheimer’s disease, the life expectancy of those with this condition has increased from 25 years in 1983 to 60 years in 2020.

And now for the first time, researchers have developed clinical guidelines for primary care for adults with Down syndrome, leading to a higher quality of care for this population.

Background

Driven by the lack of clinical research in several of the areas addressed by the guidelines, research for this life-changing development has been years in the making. Sources report that experts from eight of America’s largest adult Down syndrome medical centers spent four years examining research on the treatment of those with the chromosomal disorder.

The team focused on how Down syndrome intersected with treatment of mental health, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease.

Results and Recommendations

The result, published in the Journal of the American Medical Association (JAMA), is a paper with 14 recommendations and four statements of good practice for clinicians treating those with Down syndrome. The team’s strongest recommendation is for everyone with Down syndrome to be screened for Alzheimer’s disease starting at 40 years old.

Two recommendations urge earlier and more frequent diabetes screening. Four other recommendations — managing risk factors for cardiovascular disease and stroke prevention, screening for obesity, and evaluation for secondary causes of osteoporosis — paralleled guidance that’s already in place for those without Down syndrome.

“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, or GLOBAL, which spearheaded the effort. “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.”

For more information

Every person with disabilities deserves care, love, and support. We understand this, and we’re determined to help your adult child live a full, independent lifestyle with ongoing support and community interaction.

Contact us at (501) 227-3600 to get involved with Easterseals Arkansas or to learn more about how we can help you and your loved one today.

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