October is National Sensory Awareness Month...maybe...

Many in the sensory issues community are saying that October is National Sensory Awareness Month. Some, like Good Fountain (who heard it from Pancakes Gone Awry who heard if from...) say that October is National Sensory Processing Disorder Awareness Month. In my usual way, I immediately thought: "October is National Sensory (Processing Disorder) Awareness Month? How did that happen? Did Congress declare that long ago? Congress hasn't been creating new 'Awareness Months' for many years. And sensory processing issues have not been a big awareness movement for very many years..." 

I could find no evidence that Congress, or any other governmental body, proclaimed October as National Sensory (Processing Disorder) Awareness Month. I did find a reference by Jeff Watjen of Summit Professional Education (kudos Jeff) that says Kathleen Morris, founder and publisher of SI Focus Magazine declared October as National Sensory Awareness Month. That may very well be true. I'm not sure, but it would not surprise me if it was true. And if it is true, I don't have a problem with that method of declaration. In fact, I prefer awareness days, weeks, months, and so on that are made so by The People rather than by Congress or some other group of officials declaring of what and when The People should be aware. What I have a bit of a problem with is the unquestioning acceptance by most people that October is National Sensory (Processing Disorder) Awareness Month; I have a problem with the unquestioning acceptance by most people of just about anything based on the "I read it so it must be true." phenomenon. 

So perhaps anyone can proclaim any month as a National [Insert Your Favorite Cause, Food, Game, Thought, Person Here] Awareness Month. Does that make it so? Maybe. As Kenny Loggins wrote:

Who said that ev'ry wish
Would be heard and answered
When wished on the morning star
Somebody thought of that
And someone believed it
Look what it's done so far

My whining and railing on thoughtless acceptance aside, I would like more people to be aware of sensory processing issues. So, this post is my contribution to promoting awareness of National Sensory Awareness Month and National Sensory Processing Disorder Awareness Month. As for promoting awareness and information about sensory issues, I do that every day of every month.

If you want to learn more about Sensory Processing Disorder, you can take a look at SI Focus Magazine. It often has interesting information about sensory processing issues. It was founded by Kathleen Morris, the person rumored to have started the rumor that October is National Sensory Awareness Month that then started the rumor that October is National Sensory Processing Disorder Awareness Month that then started some people believing that October is National Sensory (Processing Disorder) Awareness Month that has, to some extent, made it so, in practice if not in law. Maybe, sometimes, blind acceptance isn't all bad. 

Happy National Sensory (Processing Disorder) Awareness Month!

The War Between Autistics and Neurotypicals

The Fairy Tale Forgotten blog has an August 10, 2012, post titled "I don't want to change." It is an example of one of many posts and articles I've seen about autistic people (or their parents or caregivers) who don't want to change the behaviors that neurotypical (NT) people often don't understand or accept from autistic people. The theme is that autistic people don't want to change. They want to be accepted. Well guess what. NTs don't want to change either. They also want to be accepted. Yes, they want us to be more like them. But for the most part, that is ignorance and the result of socialization they somehow absorb by osmosis. In most cases, it is not the heart of who the NTs are...under what is sometimes certainly a lot of ignorance and socialization crap. 

We want them to change and they want us to change. And yes, in our social climate today, over time we may be able to use political correctness and other social pressures to force the change about some actions. And about some issues, this may be necessary and appropriate. But this force will not change minds and attitudes in any good way. Such confrontational methods alone are likely to foster resentment, anger, and subtle (and not so subtle) retaliation that could be toxic and much harder to change than the original behaviors and attitudes. Use such methods if necessary. But be thoughtful. Be compassionate. Be willing to try to see it from the NT perspective. Be willing to compromise on some issues, in some circumstances. Because sometimes that will be what best serves autistics and NTs.

Some of those issues are in the same group as the ones Fairy Tale Forgotten writes about - eye contact, shaking hands, counting.

I have the same issues. I was in therapy for 9.5 years, once and sometimes twice a week, with the same therapist. He got it. He taught me compromises that made my life in the NT world easier. No eye contact. But look between their eyes, at the forehead, at the nose. None of those worked for me. What worked was to look at the mouth. It is still distracting sometimes. Especially if the teeth are interesting or the lips covered in bright lipstick or for other reasons, but those were just distractions, not discomforts and soon I learned to focus on the words coming out of the mouth. People rarely notice it is not eye contact and when they do I tell them that looking at the mouth helps me focus on what they are saying...to truly listen to them. And it does. They seem to accept and even like that. And so do I. Being a better listener...

My therapist and I also explored customs of different cultures. How in some cultures eye contact is impolite and in some cases aggressive. Shaking hands. I hate it. We explored different ways of greeting without handshaking, bowing as in certain Asian countries, always keeping my hands full with papers or books at work so that the choice not to shake hands is not questioned. That sort of thing. 

I learned to find ways to compromise my behavior without compromising my comfort or self-respect. I learned to (at least try to) understand that NTs are often programmed by their culture and simply do. not. understand. Autistic people like me don't absorb the same cultural behaviors in the same way. In both cases, it's a human thing. Just humans wired in different ways.

Should I be accepted with my differences of not wanting to make eye contact or shake hands without questions or social "punishment"? Sure. Ideally. But I live in a world of NTs and I don't mind the compromises my therapist helped learn to devise to make my life more productive and less frustrating without compromising my self-respect or comfort. And I can keep working toward NTs accepting us for these differences while understanding that most NTs are just working with the socialization conventions that they learned, usually without trying or knowing it was happening. I try to have compassion and understanding for them just as I am asking for the same from them. 

So, some therapists do get it and can accept you, not try to change "you", and try to help you have a more productive and peaceful life with NTs while maintaining and nurturing your love and acceptance of your Awesome Autistic self. At least this has been my experience. 

Sometimes accommodating differences to live as productively and peacefully as possible is not really compromise. It's rational compassion for everyone's best interests. I am not saying to change who you are. I am not saying to compromise your essence or integrity. I am saying have firm, healthy boundaries. Know which changes are not acceptable and which ones are acceptable. But give this loving, compassionate thought. Decide if you can still accommodate your needs (not to make eye contact) while also meeting the needs of others - yes, NTs often feel like they "need" eye contact for validation, to feel heard, or for other reasons that have to do with their wiring (looking somewhere else on their face). 

It doesn't always have to be Autistics vs. NTs. The more we can find ways to compromise when it is possible to do so and maintain our self-respect, relative comfort, and acceptance of our autistic awesomeness while also respecting, allowing for relative comfort, and accepting the NTs and their ways and wiring, the more reasonable we will appear and be. And more importantly, the more we will be able to honestly say, "I care and have compassion for the way you are wired. Please have the same care and compassion for me. Let's work together for mutual respect, support, and caring."

The Yellow Dog Project? I want The Indigo People Project.

The Yellow Dog Project states that "the Yellow Dog Project is an awareness, global mobilization, to help people recognize a dog that needs space (DINOS, Dog in need of space). By adding a small yellow ribbon to the leash, we hope to give owners and general public the ability to identify dogs that are not ready to say hi. This includes dogs that have had surgery, are in training, just need space, or are in a rehab/rescue program." 

Here is a one of their posters:

While people should ask before approaching a dog and dog owners should keep their dogs under control, I see no reason not to add a "Do Not Approach" yellow ribbon. But I want a "Do Not Approach" ribbon, too.

Just as there are many reasons why a dog may need space, there are many reasons why a person may need space. Many people with Sensory Processing Disorder need space. Many people with other disorders need space. Heck, most people need space at certain times or on certain days. I can see a poster for this. Very similar to the one above, but  substitute "person" for "dog" and "people" for "dogs". A few other modifications. Replace the pictures of dogs with leashes that have yellow ribbons with pictures of people wearing...umm...indigo ribbons. And we have The Indigo People Project. 

Yes! I can wear a little indigo ribbon that will give the general public the ability to identify that I am not ready to say hi. No more awkward moments when people try to shake my hand and I, literally, try to bow out of the situation. No more unwanted hugs or pats on the back. And the Yellow Dog Project doesn't just say don't pet or touch the dog. It says the dog "needs some space". Give the dog time to "move out of your way". The implication is "Do not approach." We could have an entire system for people. Indigo for "Do Not Approach." (A movable "Do Not Disturb" hang tag!) Teal for "Approach But Do Not Touch." Burnt Sienna for "Approach But Do Not Touch Or Talk About Politics". Ok, maybe I'm going a bit far with the Burnt Sienna. I'll settle for Indigo. 

Do you have times where you would rather not be approached or touched? If it were common place and the social norm to use a system to explicitly indicate your desire to have some space or not be touched in public, would you use it?

Should an adult get an autism or sensory processing disorder diagnosis?

Most autism and sensory processing disorder websites, books, organizations, and the like focus on children with those conditions. Those resources only focus on adults to the extent that adults are the teachers, family members, medical practitioners, or others involved in the lives of  children with autism or sensory processing disorder. There are some resources for adults who are autistic or have sensory processing disorders, but the emphasis is on children.

So it is not surprising that it is often difficult to find a medical professional to assess or diagnose an adult who wants to be evaluated for autism or sensory processing disorder. Many ask, should adults even bother to try to get a professional assessment? Of course, that is for each person to decide for himself or herself. I did get a professional diagnosis. And I'm glad I did. And, as you probably guessed, I'll tell you why.

I used to think there was a long list of things "wrong" with me. To list just a few:

1. I am antisocial. Most of the time I'd rather be alone than be around people. 
2. I am rigid about following rules...and about you following them too!
3. I am very clumsy.
4. I am blunt; some say honest to a fault. 
5. I have a low frustration tolerance.
6. I don't like casual contact, like shaking hands or hugging.
7. I get irritated when people act irrationally...their "feelings" sometimes irritate me (yes, I get the irony).
8. I am easily overstimulated by visual or auditory stimuli and either meltdown or shutdown if I can't get away.
9. I have little patience with most casual conversation.
10. I like a plan. Spontaneous is not my thing.

I could make a much larger list. And I did make a much larger list in my mind when I thought of all the things that were wrong with me that needed to be fixed. My mother and sister are fun, spontaneous, social, patient, free spirits. The popular girls and woman are the same. I am their opposite and for a very long time I wanted to be like them. I wanted to fix all those wrong things about me. 

When I was told that I might have autism and, like an estimated 85 percent of people with autism, sensory processing issues, I started to entertain the possibility that much of the long list of things wrong with me were as a result of the autism and sensory issues. In fact, every one of the characteristics on the list above is a common trait of autistic people with sensory processing issues. If I was autistic, that would explain most of my failings. It would make it not my fault that I was so difficult to get along with. It would make it not my fault that I was not popular. But maybe I did not have autism at all. No sensory issues. I just wanted to believe I did so I didn't have to believe that I was just messed up. Self-diagnosis was not for me. I quickly became annoyed at my own ruminating and sought out a medical professional to assess me and tell me for sure. 

The woman who diagnosed me said she had little doubt after the first 15 minutes that I have autism and sensory processing disorder, just as my doctor had suspected. But of course she did the assessments to be sure and to have the paperwork complete. The diagnosis helped me believe and accept that all the autistic things about me do NOT mean that I am broken. I'm just different. After my diagnosis, the list of things changed. Now, for example, the ten things I listed above look more like this:

1. I like people, but I need a lot of time alone. 
2. I feel safe when I have rules because I don't have to guess what I'm supposed to do. I like it when others follow rules I don't have to figure out what they will do and why.
3. I am clumsy, but it's not a big problem for me and some people even find it endearing.
4. I am direct, but people know I am being sincere when I give them compliments. They know if they ask me for advice I won't just tell them what I think they want to hear. 
5. I am frustrated easily and that's ok. It's what I do when I get frustrated that matters.
6. It's ok not to want to be touched. There are lots of people who feel this way. And it would be ok even if I were the only one.
7. Not everyone thinks like I do. Just realizing that helps.
8. It's ok that I don't want to be around bright lights and noise. 
9. I don't have to make small talk. Most people really don't care.
10. My planning abilities are a big help in many situations. And sometimes a plan to have no plan is still a plan.

Some people may be able to self-diagnose themselves with autism or sensory processing disorder and revise their lists. I needed the professional diagnosis before I would believe it. 

How do you feel about this issue? Self-diagnosis or diagnosis by a medical professional for adults. Does it matter? Why? 

Autistic women can't laugh!

It happened days ago and I'm still thinking about it. A woman saw me laugh in a video and she is now convinced that I cannot be autistic because of my laughter and the fact that I made eye contact. Wow. Really? And this woman has an autistic child. This makes me sad. I wonder if the fact that I can actually feel sad would be further "proof" to her that I could not possibly be autistic. 

Dear Woman Who Has An Autistic Child And Kicked Me Out Of Her Autism Club Because I Laughed,

Autism is a neurological condition. You can not tell for sure by looking at a person (especially on a 90 second film clip) if they are autistic. If you looked at the person's functional MRI, you'd have a better chance of knowing what you are talking about, but even then you may not be sure.

Autistic people laugh. Sometimes it sounds like a laugh. Sometimes it feels like a laugh to the autistic person, but only looks like a smile to everyone else. And sometimes it sounds like a snort! Here are some laugh acoustics of autistic people. I found those acoustics on this blog post: The Autism Crisis: The autistic way of laughing.

Autistic people can be taught how to look at people in a way that seems like (or even really is!) eye contact. Most of the time I don't make eye contact. Sometimes I remember that neurotypical people like eye contact, so I look at the place between their eyes so they feel better and I don't get as distracted or uncomfortable as I would with direct eye contact. If I feel very comfortable with the person, sometimes I actually do make direct eye contact with them for a few seconds at a time. 

Laughing and making eye contact does not "cure" my autism or kick me out of the "autism club" (aka Club 299, and no, I didn't purposefully join any club).

I am sorry that you don't understand. I am sorry that you think you do understand and say things that are untrue. I hope someday you really do understand or, at the very least, that you understand that you don't understand. 

Sincerely,
Miss Sensory

I'm a coward, I'm just not very good at it.

I'm a coward. And I like to define my terms because I like to be as clear as possible. It's frustrating that I can't just show you the movie that is my thoughts. (Like many autistic people, I think primarily in pictures.) No, I have to translate the movie into words and when I look up a word, each dictionary has its own definition of the word. What kind of system is that?? Can't we have one dictionary that lists the definitions with some sort of order, ranking, and context and all use that? Ahhh! So, I will link to a definition I think is close to what I mean when I think it may help express my thoughts more clearly. But I digress..

Coward. This definition fits what I mean fairly well {Fare thee well! Fare the well! Fare thee well my...sometimes I'm amazed that I get anything done with all these side bars my mind creates.}: "Coward: a person who lacks courage in facing danger, difficulty, opposition, pain, etc." That's me. I'm just not very good at it. I don't think that my poor showing as a coward is the result of courage . No, I'm usually a lousy coward because I get distracted. I forget to pay attention to the "danger, difficult, opposition, pain, etc." because I'm focusing on what I want to get done. Or I just get impatient with my cowardice getting in my way. Distraction and impatience. Not as ignoble as some reasons that I can think of for being a lousy coward, but certainly not as noble as being courageous.

I'm not just rambling on this topic for no reason. I'm dependably purposeful.

I had planned to be anonymous on this blog, not wanting to face the "difficulty, opposition, pain, etc." that might come from letting my name be known. But once again, my cowardice is getting in my way, so I'm throwing off the cloak of anonymity that I wore for all of three posts (including this one) and forging ahead.