What’s so hard about being an adult with Autism?

There’s a phrase I frequently repeat when I’m frustrated: “There is no such thing as an Autistic adult.” I adopted this phrase after reading the linked blog post. In truth, I often find myself frustrated.

My husband, who founded this site always encourages me to write more here. While I enjoy writing, I tend to write less when mentally and/or emotionally exhausted. Welcome to the last decade or so of my life!

The article linked above makes the case that support and services for those with autism end at about age 18 which is ludicrous because one does not age out of autism. I don’t fully know about the differences in the availability of services as my (now 29-year-old) son with autism was not diagnosed until age 20. I can say that there is a whole network of services for minors with learning disabilities through the school system. I have another child who requires such services. Services available for adults seem virtually non-existent. Finding and qualifying for them can be like finding a needle in a haystack if they even exist. This is excessively frustrating to understand and live with, especially when you didn’t know your child needed services or would have benefitted from them in K-12 grades and your child had “aged out” before you understood their need.

While I can’t fully answer the question the title above asks, I can share my experience as the parent of an adult with autism.

So how does autism affect adult life? Here’s an example of our son being called for jury duty, when he was 23 years old. It’s a simple matter, right? In California (where we then lived), you simply call the number provided in the letter on the assigned date and find out if you are selected to appear for service. Simple. Only, it’s not to one with autism, who has the common accompanying anxiety and executive function challenges. So how did this eventually work out? It wasn’t easy.

My son missed making the phone call. He had set an alarm on his phone to remind him but my husband and I weren’t home the evening he was to make it and so… he just didn’t call. We were quite surprised. I mean, it’s pretty easy, right? You call, find out, end of story. But because my son had no previous experience with this situation his anxiety due to a lack of familiarity caused him to become overwhelmed. We weren’t there to help guide so he shut down and did nothing. This resulted in a stern letter from the courts giving him a chance to make it right and follow through one more time (he could select a date range) or risk legal penalties as jury service is mandated by law. This, of course, overwhelmed him again.

I had to walk him through the online process stipulated by the letter and I had him put on his phone calendar the day he was to call. I put it on mine, also, which is shared with my husband so we both knew about it and could make sure it was not skipped, again. The fact I put it on my calendar was a saving grace because my son had marked the day he was to potentially serve but had failed to note that he had to call the night before to see if he needed to appear. Had I not taken a proactive role in the situation to make sure he did make the call the night before, my son would have wound up facing legal penalties including the possibility of fines and jail time. He was not trying to avoid service at all, he just lacked the skill set/experience/ability to navigate the system. New and unfamiliar situations that require him to act or follow a specific directive overwhelm him and cause him to shut down. He means to follow through, but often his neurology gets in the way. He did call at the second appointed date and he was selected to appear for service. Great, all should be fine from here on out, right? No. It wasn’t.

He was mandated to appear the next town over at 8 AM. We live close to our town’s courthouse, but the courthouse the next town over is about 23 minutes away. By car. My son (as is not at all uncommon among adults with autism) does not have a license or a car. Instead, he uses the bus system. But there is a catch. Whenever he takes a new route, my husband will take it with him to help quell his anxiety and uncertainty. He had never taken a bus to the town where he was expected to appear, and further, the buses run about every hour and begin at about 7 AM. We all know that buses make frequent stops and are not the most efficient mode of transportation.

(When my son had to take the bus to the satellite college campus the next town over from us, which is about 25 minutes from our home in the opposite direction of the jury duty town, it took him an hour to get there and 1.5 hours to get home.)

Taking the bus wasn’t possible because 1) our son didn’t know the route- if there was one, and 2) the travel time and bus connections could have made him very late exacerbating the problem. The only solution was for him to be driven by a parent. Imagine the difficulty if both parents had been confined to a  9-5 job with no flexibility to transport him.

One may think the fact he had to be driven by his parents and needed our help navigating the whole situation is no big deal. Now, stop and think of all the new situations and systems you have to navigate on a daily or weekly basis and you might begin to see the problem and how it affects the lives of the parents as well as the child with autism.  It’s not that my son is unintelligent, it is quite the opposite. He is articulate and is not obviously affected by autism on first impression. This can create more problems as he is often expected to function in ways that are very difficult for him and require a lot of support behind the scenes and at a level to which others are oblivious. Ways that are exhausting for us parents. See, just at the time you think your child should be stretching their wings and moving towards independence, you are confronted with the reality that in many ways they are MORE dependent upon you because society expects more of them. As you can imagine this reality is a bit crushing and is at odds with how society/others think (heck, how I thought) the trajectory of an adult child should materialize.

My husband still has to walk our son through every process relating to the college system, from enrolling in classes to communicating with professors when difficulties arise, etc. Our son struggles greatly with college. Sometimes he can handle only two classes, sometimes more, but always he struggles to keep up. And it’s not due to a lack of intelligence. Often he needs extensions simply because of his inability to juggle many tasks at once due to anxiety, ADHD,  and dysgraphia. Autism is not one neurological issue, rather it encompasses a plethora of issues/disabilities/mental processing/learning issues along with the often-understood social issues. This cocktail of issues led our son, who had received a very nice scholarship from a private college on the East Coast, to struggle greatly with independent self-structured living.

People with autism typically struggle with structuring their daily lives and following through, otherwise known as executive function. His year away at college left him $12,000 in debt with little to show for it. Shortly after he came home at the urging of his former college’s psychologist, we pursued having him tested which led to his autism diagnosis.

It’s not uncommon for those with autism to develop areas of special interest, fortunately for my son, his interests happen to be in computer science/programming and tech-related topics, so hopefully one day this will result in him being able to secure a job. I don’t expect it will be an easy path, and I doubt his finding a job will happen in a typical manner with interviews, etc. He does have the aptitude, so I am hopeful. Meanwhile, I pray for a path, a person, who can come alongside him and hopefully mentor him. Someone who understands that my son is capable, he just functions in some different ways that a little understanding can help mitigate.

One thing I find incredibly troubling in the jury duty situation is that my son could well have found himself in jail had we not stepped in… simply due to his neurology, not because he had any desire or intention to thwart the law. This prospect is frightening and leads me to question: how many individuals with disabilities are in jail not because they are bad people who meant any harm or meant to break the law, but simply because they lacked the support and guidance needed to help them navigate complex governmental systems? The possibilities are staggering.

ETA: It is now six years later, life with my son is largely unchanged. He has made more progress toward his degree. He is a senior majoring in computer science and hopefully will graduate in the next year or so. But, I can’t emphasize enough how much scaffolding he requires from us. Whenever he has a paper due, I must drop whatever I’m doing for a day or two and coax him through gathering information and writing the paper. This has been a challenge because for the last two and a half years I was a full-time college student. We now live in Tennessee and have located some resources for which we hope he’ll qualify. and help him toward a more independent life for his sake. After a year of trying to find assistance- from healthcare to disability assistance – he finally has healthcare and we are working towards other prospects. It takes a lot of mental energy on behalf of the parent to juggle all these things along with other family responsibilities, like our younger child who also has autism.

ETA#2: It is now nearly 8 years later and my son has his degree. Praise God! It was a very long and difficult path. He’s received more assistance, like in-home support and community integration services, but he still struggles. His sleep schedule is a bit of a wreck making some things challenging. He’s getting some assistance in looking for employment. We are still hoping for that path that can lead him to his full expression of himself to find him.

This essay is from our Anastasis Series where we resurrect articles from the past that are either still relevant today. This piece was first published on June 6, 2016, and has been lightly edited and updated.

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  • No offense, but one thing makes it really hard being autistic as an adult is that the conversation around is always about the people around us, not we ourselves. Even fully grown, people will ignore what i have to say about having autism to hear what you have to say as a family member of someone like me.

    Not only are autistic adults ignored to talk about autistic children, but we constantly get treated like children.

    • Thank you for your feedback, Daniel. That is a very real point. If you would be interested in writing a piece from the perspective of a person with autism, I think that would be a valuable contribution and we would be happy to consider publishing it.

  • Tana Colburn says:

    Thank you for the essay and the updates. We have similar issues with our son. Both of our children have been diagnosed with ADHD: our son at age 7 and our daughter as an adult. Our son was also diagnosed with ODD, and his social shyness/awkwardness indicates a level of autism.
    He doesn’t like new/unknown situations, but has gotten gradually better as an adult. He decided to attend the Bible college where I teach, not because he wanted to study the Bible, but because he was familiar with the people. He applied for his current job because he owner of the company is the son of our pastor at that time.
    It took him 10 years to get his AA–for the same reasons you described with your son. His sister got her driver’s license as soon as she could at 16. Our son waited for several years. He doesn’t really like driving, so it is quite ironic that he is driving for Amazon.
    Congratulations to your son for completing his degree. Both our sons are fortunate to have caring and involved parents to help them navigate an increasingly complex culture. Would that all children have the same level of care, love, and involvement from their parents.

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