What’s it feel like to have Autism Spectrum Disorder as an adult?

I am pleased to introduce Aaron Likens as a guest blogger today. Aaron was diagnosed with Asperger’s Syndrome (now Autism Spectrum Disorder) at age 20 and is now the Autism Ambassador for Easter Seals Midwest. This guest post was originally published on Aaron’s personal blog, Life on the Other Side of the Wall.

The island problem

by Aaron Likens

Aaron LikensI’m sure at some point in time I’m made a metaphor or two involving an island and, once again, I’m coming up with yet another island metaphor. It’s going to get difficult to remember all these islands I’m creating….

In the midst of this period of feeling down I’ve done a lot of thinking, too much probably, but I’ve noticed an unique pattern that I can only explain using an island as an example. I don’t know about others with Asperger’s, but for myself I feel like I’m on an island. I used to say a deserted island but I have come to learn that this island actually has two bridges connected to two mainlands.

These two mainlands represent two different worlds. On the bridge leading to the right we have normal. Now remember I don’t believe anyone is normal, however wanting to be more normal is something I feel and there is an illusion of normal, all of which are on that island.

As we turn to the left and see that bridge, it leads to a place that is rather uninhabited. It’s a place that often times I feel I want to be and herein lies the problem; both mainlands don’t feel right and I spend my time on the island in the middle always thinking that the place I came from isn’t as good as what lies on the other side of the bridge.

This island in the middle is a place of deep thought. When I spend too much time in the land of normal I get tired with the constant conversing, socializing, and random encounters so I look across the sea and think back to the mainland that is empty and yearn for it. I mean, how great is it to go through life without interactions? When I’ve spent too much time on the land of normal this is how I feel.

When I get frazzled from normal, or not fitting in within the land of normal, I make the trek across the bridge and get to the island where I quickly cross the second bridge to the land of emptiness where I am sure I will find happiness. Each time though the happiness is fleeting and I look back across the bridges from which I came and think about how great it would be to be a part of the land of normal.

After a while this journey across the bridges gets tiring and this island in the middle feels like home. I’m not on either land and yet I’m a part of both. It becomes difficult to decide if staying on the island is the surest bet or if I want to venture out into the world of normal.

When I think about how great the land of emptiness would be I think about how much I would have missed had I stayed there. I certainly wouldn’t be presenting, I wouldn’t have met such wonderful people within the SKUSA and USAC series, and my life wouldn’t extend much outside the walls of my house.

However, when I get exhausted, when life gets overwhelming, or when a major social disaster happens I think about how safe the other place would be. Hence why there is this island problem and staying on the island often times isn’t so much a choice rather a necessity.

This metaphor has been made in so many different ways, but as I was thinking last night about a new way to present it. I came up with this and I could visually see this island in the middle and it felt perfect, and writing this — I hope I did a good job of writing it because it sure made sense as I thought about it — has just confirmed just how apt this is.

For others I’m sure it is different but for myself this is the best way I can describe to you the feelings that go through my body and how I see the way my life is.


 

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  1. Debbie Says:

    Thank you so much Aaron for your very articulate and well written article from October 22, 2014. I am new to this journey and found your writing profound and insightful.
    I look forward to reading more, being encouraged and mentored by your presentations.


  2. Aaron Likens Says:

    This is a tricky issue and one that, I think, will be played out more and more and at the same time is somewhat of a no-win situation. Perhaps “no-win” isn’t the best choice of words as it’s more along the lines that both answers are right and both answers are wrong.

    For one, a school can’t disclose the medical information so the other students will be in the dark. This is right because medical information is private but at the same time I ask have to ask how there can be any compassion or empathy without knowledge? My resounding theme throughout my speaking career is, “understanding is the foundation for hope” and without a baseline knowledge of whats going on other students will, naturally, see a double standard or think that the teacher is playing favorites.

    However, parents may a fear that if it is disclosed what the possible condition is they may fear labeling, or the stigma that may go along with whatever it is. As I said, this is tricky and I don’t know if there’s one answer to give because all can be right and all can be wrong.


  3. Beth Finke Says:

    Nicole,
    I’ll run your question by Aaron to see what he thinks. In the meantime, I’ll put my two cents in. I do not have any expertise in ADA law but have a feeling that schools and such are not allowed to disclose a person’ disability without their consent – I know, for example, business and social centers and such are not allowed to ask people who use service dogs what their disability is. It is unfortunate to think that this girls parents may not want others to know what her disability is, for, as you say, it might help the other children in class to understand why it is this girl acts the way she does. Everyone is different, though, and if this girl or her family does not want her disability disclosed, maybe best to respect that.
    Wish I had a more helpful answer, perhaps others who read your comment here might have ideas?


  4. Nicole Says:

    I heard you speak at a diversity conference in Jefferson City, MO. I enjoyed your presentation. I have a few questions. My daughter goes to a fairly small private school and has a student in her class that has some social/learning issues, but I don’t know exactly what they are. The children in her class have not been told about her issues. She gets some special treatment and gets away with comments and behavior that the other students don’t get away. It is confusing to my child, and others, as to why this child is treated differently. She is new to our school this year, she is in 6th grade. I am wondering what your opinion is on if the other students should be informed about the issues/struggles this child might have so they can better understand her needs and more helpful. Right now, it has gotten to the point where most of the kids dislike her because she is treated differently and they don’t know why. It is a good group of kids and I think if they were aware of her struggles and knew how to help her and better understand her behavior that they could be better friends to her. There is quite a bit of resentment towards her. Thanks for your time. And again, your presentation was very informative.


  5. Derick Winterberg Says:

    As always, your thoughts and blog posts give those of us across the bridge a glimpse into your world. I always enjoy reading what’s on your mind and hope to come and see you again soon.


  6. Wendy Sullivan Says:

    Thank you Aaron for once again providing us with insight about living with autism. Your colum is thought provoking and heartwarming. We are all learning a great deal,while thoroughly enjoying your writing.


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