There are 3 secret struggles high functioning adults with autism wish you understood. Yes, there are more? But these are really important to be aware of.
Living with autism presents a unique view of the world that many don’t see, or take enough time to understand. Primary groups like family and close friends are usually the ones who get a close-up view of this world. In entering, they get full exposure to the many layers of complexity that exist within autism.
If you are a part of that primary group, there are a few things you should know. As you are aware, high functioning adults have a very particular way of thinking. As a result, there are several pitfalls that they are more susceptible to. So my purpose in this post is to give you a heads up so that you are mindful of them. In so doing, you may help them get through these struggles.
Before we dig deeper, I must note that the medical community has changed the way it talks about autism. Before 2013, people commonly referred to the category of “high functioning autism” (or HFA). With the 2013 release of the DSM-IV (diagnostic manual), the medical community stopped using that term. Now “high functioning autism” is under the Autism Spectrum Disorder diagnosis. For more on this change, click here.
Since many still look for information under “high functioning autism,” know that the information sought will currently be found using the Autism Spectrum Disorder label. So let’s get into the 3 silent struggles.
Struggle #1: Feeling Conflicted
For many high functioning adults, being mentally conflicted is an ongoing occurrence. Some of this takes place in social contexts where people make certain assumptions. There are a number of situations that could serve as examples. Let’s use the example of a boss and an employee. Common in this scenario is that bosses can treat high functioning adults as though they don’t have a disability. And you may be saying, “What’s wrong with that? Aren’t we supposed to look past their disability?”
At this point, I’d make the distinction between looking past and overlooking. Huge difference. High functioning adults can be very proficient at many things. And it’s that skill level that’s very misleading! Seeing only their proficiency, the boss becomes persuaded that there is no disability. He flat out denies that the high functioning adult has autism! So this now creates a higher expectation of how the adult is to perform, despite the disability.
This situation causes a lot of internal conflict within the high functioning adult. The denial of the disability elicits conflicting emotions. It creates added pressure to perform without having proper accommodations. Denying their disability can also be very embarrassing to the adult. To add, the adult now has to somehow justify the existence of their disability.
For anyone familiar with how high functioning adults think, this is a recipe for disaster! Their mental energy can get so consumed with these nuances that it becomes a whirlwind.
The danger is, high functioning adults can develop an unhealthy preoccupation with this. So by all means, do whatever possible to avoid this pitfall. Talk with your high functioning adult to strengthen the relational bond. Discover where their strengths lie. Provide boundaries for them to operate within their limits. Find out what expectations are being placed upon them. Seek to find the source of their mental conflict. Be patient. Be there.
Struggle #2: Distraction
Distraction is another struggle for the high functioning adult. It’s commonly known that skills requiring planning are a challenge for these individuals. This would include both task completion and time management activities. So this is a perfect place for distraction!
One of the main areas I’ve seen this is during tasks that involve multiple steps. So for example, let’s say Anthony has 1 hour to complete a History assignment. If he finishes on time, he will get to go out to eat. He understands and is willing to work. The assignment isn’t particularly difficult for him. It requires that he read a few web pages and answer questions.
Even though he’s capable of completing the assignment, he encounters an unexpected question. Distraction then sets in. Reminders of the time remaining have no bearing on his performance. And the problem isn’t that he doesn’t want the reinforcer. So now instead of searching for answers, he’s playing games on the computer.
You ask where he’s stuck and he has difficulty verbalizing. And even with being physically present with him, he still has difficulty.
The same can happen when changing from one environment to another to complete a task. Before you know it, the child has totally forgotten what the task was in the first place. When distracted with activities of special interest, things get even more interesting. The high functioning adult can become so consumed that they lose track of time for hours.
To avoid this, the high functioning adult needs to find ways to stay engaged. One way to achieve this is through shorter tasks. Instead of taking a huge chunk, approach the task in smaller sections. Allow for frequent short breaks. It also helps if there is a protocol to follow when the high functioning adult gets stuck.
The individual needs to be able to request help. If the adult is inefficient in requesting help, adequate supports would be needed. This could be another person who would help the adult learn and apply the strategies in real time. The support person would need a trained eye to recognize when the adult is stuck. The support would also need to know how to prompt and fade their assistance. In short, it’s about providing the necessary help to get them back on track.
Struggle #3: Loneliness
For individuals with high functioning autism, their circle of support is indispensable. This circle often includes family, close friends or even therapists. These individuals are critical because each provides a different type of needed support. Knowing the high functioning adult well, they can translate their experiences to others.
As valuable as these supports are, high functioning adults often struggle with loneliness. A part of this is due to the interpersonal challenges of the high functioning adult. It’s no secret that they do have difficulty with some socialization.
The other part may be due to the type of relationships they currently have. Keep in mind that many of their relationships tend to be support-oriented. So it makes sense that they would desire a different type of relationship.
Some feel as though no one truly understands them. Others fear that no one wants to put up with them. And of course, there is the fear of lifelong loneliness.
These are issues that are very personal and extremely hard to navigate. Your heart aches because you know you’re limited. You’d do whatever’s within your power to relieve their pain, but you can’t.
Parents and friends, accepting that you have limited control is hard, but necessary. You’ve been placed in their life for a specific purpose. You have a unique relationship with your loved one and you can’t change that. You can only provide the type of relationship that you’ve been designed for. Do it faithfully. You can’t be someone you aren’t, and that’s okay.
For the lonely high functioning adult, your struggle is unique. You appreciate the love from your circle of support. But you long to experience love from outside of your family and friends. Opportunities for exposure and engagement with people in a safe context is helpful.
Searching is to be expected. And the internal longing is only natural, as that is a part of the human experience. But realize that you also have limits. You can’t make someone else love or accept you for who you are. Finding someone that won’t just tolerate, but will accept you without condition is a true gift.
The journey for the high functioning adult has many challenges. This post barely scratches the surface of the complexities involved. Being aware of these struggles and the tips can make a difference in your life or the life of your loved ones. Seek support wherever possible. Love and appreciate those who invest in you. Increase your understanding. Consistently and properly apply useful strategies. All of these will make a difference.
A.D. Daisley holds a Masters Degree from the University of Central Florida and has been working in the field as a Behavior Analyst since 2005. He has provided services to children and adults with varying diagnoses such as autism, mental retardation, and attention deficit hyperactivity disorder (ADHD). His scope of experience also includes coordinating therapy to individuals and families in conjunction with other supports including School Teachers, Adult Day Training Facility Staff (ADT’s) and Speech/Occupational therapists. He is the Director and Behavior Analyst at Alternative Outcomes since 2007. A.D is also the Director of Creátre, a non-profit organization that uses the arts for the purpose of skill training, outreach and to display community leadership.