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Hidden Words: Emotions, Thoughts and Feelings in the Silence

Writer’s note: I can’t stress enough that, “If you’ve met one person with autism you’ve only met one person with autism” as it applies greatly to this post as these examples are mine and mine alone. Also, to some of these situations, on any given day, the words behind the words could be different…

A lightbulbA teacher once asked me, “Do you need any help?”

What I said: “No.”

What I was thinking: Why did I say no? I do need help, so why did you ask instead of just helping me? I know I need help but why don’t you? I just don’t get this, these fractions make no sense and the rules for inverting or, flopping, or whatever it is when dividing, or is it multiplying, makes no sense. Please come back, help me, but if you ask again I’ll probably say no.

Many times in my life I’ve been told, “Aaron that was a good job!”

I have often responded with a hesitant, “Yeah,” and with a halfhearted, “Thanks”

What I’ve thought: Was it a good job, really? I know I could’ve done better because it wasn’t perfect. With that said, are you just telling me it was a good job or are you just telling me it to be nice because I know that’s what people do so I’m actually confused right now. If I seemed a bit stuck up after your compliment I had no intentions of seeming so, it’s just that I don’t know how to respond because I quite honestly have no idea if what I did warranted praise because I simply did what I did because it needed to be done.

In first grade he music teacher played something to show us what heavy bass felt like and I quickly rose my hand and said, “It is hurting me!” She responded with, “No it isn’t!”

What I was thinking: No it isn’t? Then what am I feeling? I can’t state that it’s hurting again because my classmates will probably laugh at me, but teacher, I’m feeling something I’ve never felt before. My legs and arms feel as if they’re on fire and I’m feeling every bit of noise. Why didn’t you believe me? Maybe someday I’ll be able to explain this, but for now I’ll just close my eyes and try and endure this onslaught of noise.

Many, many times in my life a loved one has told me, “I love you.”

My response is always the same, “…”

What I think: Oh my goodness, I’m silent again, but I do, I do love you, but I can’t say it. I don’t know why I can’t say it, but I do. In this silence is the struggle I face. For some reason expressing emotions just isn’t there but that doesn’t mean that I’m lacking in it.

Maybe it’s fear that someday I won’t hear those words; maybe it’s a fear of your reaction should I say it and this could be even more so because I haven’t said it for so long. This silence must be hard for you, I understand, and you may think you’re talking to a wall as I stare back at you in a blank stare, but I’d like to say so much but am simply unable.

I know I’m loved because you keep telling me and yet I keep responding with silence, but you must, I hope, know that I love you because you keep telling me and each time I wish I could reciprocate, but I hope you understand hidden within the silence, or the words I may sometimes say in brief, are many more emotions and thoughts than you can imagine.

I’m in here, I really am, but sometimes I just can’t tell you what I want, what I’m feeling, and that fact that I truly appreciate you and all that you are and all that you’ve done for me.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron:

Source: Easter Seals And Autism (http://www.easterseals.com)

Survey: Share Your Experience Using a Service Animal in Public Spaces

idcardLast month I wrote a post here about an article in Outside magazine. In that article, journalist Wes Siler — a dog lover who does not have a disability — expressed his concern over people without disabilities faking that their dogs are service animals, and now the Southwest ADA Center wants assistance animal users to fill out an anonymous survey to learn more about our experiences accessing public places with our animals. From their press release:

“The information gathered from it will help us 1) understand what access issues people are having with their animals; and 2) to develop and improve the information, support, and guidance needed for the community to improve access for users of assistance animals.
Whether you use a service animal or other type of assistance animal, we would like to hear from you.”

I just filled out the survey myself. After the first quesTell tion (which confirmed my eligibility for this survey) I could skip any question I preferred not to answer, and that made the form easy to fill out. I did it with my talking computer, and it only took about ten minutes.

I hope you Easterseals blog readers who use assistance animals will fill out the survey – people need to know more about our experiences getting access to public places. Any questions about the research study? Contact Vinh Nguyen at the Southland ADA Center at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Source: Easter Seals And Autism (http://www.easterseals.com)

This Crucial Health Insurance Program for Kids Just Expired

The exterior of a hospital with "EMERGENCY" spelled out in letter on a marqueeOne of our focuses here at Easterseals is ensuring children of all abilities have the best possible start in life. Through our Make the First Five Count initiative, inclusive childcare, and early intervention programs across the country, we’re committed to providing a solid foundation on which kids can grow and thrive. In addition to the services we provide, we’re also committed to advocating for the resources that make these programs accessible and affordable, like the Children’s Health Insurance Program (CHIP).

If you’re unfamiliar with CHIP, here’s what you should know*:

  • Approximately 9 million children across the United States are enrolled in CHIP, which covers children in families who are do not qualify for Medicaid;
  • 370,000 pregnant women in 19 states are covered by CHIP;
  • CHIP includes immunizations, check-ups, dental coverage, mental health, and substance abuse services;
  • CHIP was first passed in 1997 with sweeping bipartisan support.

So why are we talking about CHIP now? Because on September 30, 2017, federal funding for CHIP expired.

The implications of this expiration are potentially devastating to millions of families.

In a statement issued by leading child health and advocacy organizations, experts warned “By not acting in a timely manner to extend CHIP funding, Congress has caused [families who rely on CHIP] to face the threat of losing coverage altogether. Moreover, the patchwork of state funding deadlines means that a child’s or pregnant woman’s access to continued CHIP coverage will depend on his or her ZIP code.”

Families across the United States, including many we serve, are facing uncertainty as a result of CHIP’s expiration.

Right now, we need your help to make it loud and clear to Congress that they must extend CHIP through the bipartisan legislation that is part of CHIP’s fabric. Here’s how to join the cause:

  1. Use the hashtag #ExtendChip to reach out to your U.S. Senators and U.S. Representatives, OR tweet out THIS message:

    A tweet that reads: Nearly 1 in every 2 kids with special #healthcare needs relies on #CHIP & #Medicaid. Take action to #ExtendChip.
  2. Contact Your Members of Congress
    Use our action alert to automatically email your representatives.

Let us know your thoughts about CHIP’s expiration in the comments below.

*Thanks to the American Academy of Pediatrics for their advocacy, talking points, and resources regarding CHIP.

Source: Easter Seals And Autism (http://www.easterseals.com)

How I Feel When People Say “It’s Not That Difficult”

A man sitting on the bank of a body of water watching a very vivid, orange-hued sunsetIn my life there has been one constant that’s been worse than any other event: When someone says, “But Aaron, it’s not that difficult!” When those words are uttered I’m devastated.

Here’s why they hurt: Do you think I’m not aware that it’s easy for others? Do you think I want things that come easy for others to be difficult for myself? I’m a hard enough critic of myself as is but when others point it out and then think I can simply use willpower to make what is difficult easy is, well, damaging.

Do I want things to be easy? Of course I do. I don’t want to create confusion as to why I can do some things great and many things not as well. It has to be confusing as to why there can be this great chasm between being great and simply not being able to do it no matter how hard I try, but when another person uses a tone and those words of telling me that it shouldn’t be difficult, well, to be perfectly honest it creates a storm of self-hatred.

I know certain things are difficult and I know when these things occur I often retreat. I don’t know how others socialize so well, and at social functions I look at the world in utter awe and wonder, “How do these people do it?” They make the impossible seem so easy and I have such a hard enough time talking to people I know.

Now, for those that know me, they won’t think twice about it, but if someone didn’t and saw me, and let’s say they’ve seen me present, they would be confused because there’s a person that has great speaking ability appearing socially paralyzed so why is it so difficult?

I get it, I understand the confusion others must face when encountering Asperger’s and maybe a select few will think that by saying, “it’s not that difficult” they are offering the best form of motivation possible. However, this isn’t the case and the seeds of self-loathing are planted.

There’s a fine line between encouraging words and words that can do harm and telling me what is and isn’t difficult doesn’t help me one bit.

So, what would I say to people who tell me “It’s not that difficult”?

I’d begin with the difficulty of trying to filter everything out in a room be it the noise of the electronics, the voices from other rooms, the noises outside, and the potential hum of the lights. I’d talk about the anxiety walking into a building and wondering if that person, or that person, would stop and talk to me. What would they say? How would I respond? How long would we talk? I’d tell them I’d analyze every potential encounter whether it occurred or not, and then stress as I passed them on whether I should’ve said hello only to redo the whole process once I passed the next person.

I’d talk about the fear of eye contact, the draining nature of experiencing positional warfare, and the constant fear of being a nuisance to anyone and everyone because that’s how I often see myself.

So, you can tell me certain things shouldn’t be difficult but I only wish you could walk a day in my shoes.

Of course, to some, this is simply an overreaction, right? Words shouldn’t hurt, right? It shouldn’t be that difficult, right?

If only they knew how many thoughts and tears have been created by that sentence and for anyone reading this I want to say you’re not alone in the frustration of being told something should be easy when it isn’t. Would it be wrong for me to say that, for those that use that sentence, it shouldn’t be that difficult to understand how much heartache is caused by those words?

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.</em

Source: Easter Seals And Autism (http://www.easterseals.com)

Asperger’s and Employment: What I Wish I Knew Then

A man writing on a pad of paper at a desk in front of a vivid orange wallEmployment and having a disability (I have Asperger’s syndrome) can be a tricky combination. It can be even more difficult to navigate when one doesn’t know they are on the autism spectrum. I navigated my first several jobs not knowing (I was diagnosed at age 20).

With that said here are five things I wish I knew about having a job then that I know now.

1. Chain of command.

At every job I had I didn’t understand that there was a chain of command. When I worked at the video game store I emailed corporate through the chain’s internal network. Well, I actually emailed the CEO fearlessly not knowing I was out of place. However, they listened and changed a policy! I was also told not to email them again.

2. Small talk.

When I worked at the bowling alley and then the video game store I didn’t understand why my coworkers would try and chit chat about things I deemed irrelevant. Actually, I took this as a sign of the utmost disrespect because I thought, “How dare they talk to me about such things because I’m at work to work.” This isn’t to say that a person should go to work to talk, but I didn’t understand that they were trying to be my friend by talking to me about non-work related topics.

3. It’s okay to ask for help.

I worked at a racing shop as the office manager and the owner would often give me a long list of things to do such as, “Go into the shop, find this item and that item, then put them in a box, and mail them to so and so at their alternate address.” I didn’t realize I have some auditory processing delays and that anything after the first directive became lost on me. But did I write this down? No, I didn’t and I would always have to go back and ask again, and again. This angered him, but I could’ve helped myself by asking for help before I went searching by asking him to write it down instead of trying to do it without assistance.

4. If possible, find a job that is in an area of interest.

This is critical, but can’t always be done. However, if it can be, motivation is going to be higher. My second job was at a video duplicator (remember VHS tapes?) that saw me load 85 VHS tapes into VCRs, wait an hour, take those tapes out, label them, box them, ship them, repeat eight times a day. I will say I loved the routine of it and I got highly efficient at it, but it wasn’t something that I had interest in. This isn’t to say every job is going to be enjoyable, but if one is looking for a career long term then if it’s in an area of high interest the chances of burnout will decrease. The video duplicator job lasted no more than four months.

5. Team effort.

My hobby job now is that I am the flagman for two national racing series. When I first landed these jobs I was quiet about my diagnosis because I didn’t want them to think less of me. It was kind of hard to hide and when I opened up I let them know my strengths and my weaknesses. It was the best thing I’ve done because as we grow the amount of awareness and understanding out there, people are going to be more accommodating and understanding. I’m no longer put into situations that I can’t do and am instead put into areas where my strengths show. I know not every place of employment is going to be that way, but as they become so I hope the strengths of us all will have the ability to shine much, much brighter.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

Source: Easter Seals And Autism (http://www.easterseals.com)

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