May 12, 2013

Several months back I was speaking with a nurse in the pediatrician’s office. I had taken Bas in for his yearly physical. Because I cannot for the life of me remember the woman’s name, and it’s not necessary for the post anyway, I will call her ’Nursie.’

Nursie was pleasant, intelligent and… talkative. The first two I’m good with, the third I can usually do without. However, this conversation went somewhere I wasn’t expecting and I found myself enlightened at the end of it.

It Went A Little Something Like This…

“I have a friend whose child has autism,” Nursie says to me. I’m guessing she mentions it because she is checking my son’s vitals and he happens to be autistic. And I think to myself I know where this is going, so I head it off.

“I see,” is my reply. This usually stops the conversation.

Nursie was determined…

“My daughter has Asperger’s,” Nursie confides.

Oh! Surprise! This conversation may be well worth my attention after all. I love meeting families with autistic kids!

“Oh, wonderful, and is she doing well with it?” I ask. And what I mean when I ask this is, are you all understanding and accepting the differences of autism as a family unit.

“Oh, well we aren’t going to tell her,” Nursie says.

Imagine my infamous blank look. Here’s a pic so you get the idea. This look generally has people talking on so as to elicit some facial expression from me thereby eventually discerning my thoughts. As usual, it worked as Nursie continued …

“Well, we don’t do the formal diagnosis, and we don’t tell her, because we want her to fit in. We don’t want her to think she’s different.” Nursie smiles as if we parents are all in this ‘cover-up’ together. Nursie doesn’t know I am autistic nor does she know my oldest daughter is. She sees my son and knows he is and understands that his autism is ‘out in the open.’ Nursie is under the impression that if you are an Aspie you can fit right in and no one is the wiser… even the person with Asperger’s!

Oh, Nursie, if you’d only read my blog and those of my autistic friends!

Autism ACCEPTANCE And Why We Must Advocate For It Above And Beyond Awareness

I was raised as an NT child. Not because my Mom didn’t want me to know that I was an Aspie, but because she didn’t know I was an Aspie. I’ve talked about masking before here, and many Aspies are brilliant at it. However, whether you tell us or not, I feel confident in saying that:

We know we do not fit in by NT standards and we know that there is something different about us. And eventually we’re probably going to find out. And by keeping that information from us you are showing us that you do not ACCEPT autism. And by hiding a part of ourselves from us you are showing us that autism is a bad thing. Right?

If we hide the fact that our children are autistic from them we merely propagate the fear of autism.

I don’t think you have to parade around with banners and signs reading “I/My child is Autistic!” I mean, you can if you want. I don’t do it, but I do talk to you guys about autism very openly because I want you to learn about autistic differences. It’s not a wholly altruistic move as I will want something in return…

Eventually I’ll want you to ACCEPT Autism.

I share my personal feelings and I share stories about my kids (with their permission) because I want you to see the differences in learning, understanding, thinking, feelings, emotions, sensory and auditory perception, etc… But most importantly, I want you to see the good in autism. I want you to see the positivies.

“It’s not always rainbows and butterflies…” - Maroon 5

No, it’s not always rainbows and butterflies, but by changing the way we talk about autism, we can change the way others perceive it. I can assure you through media, campaigns and societal reaction on the whole, they already know of the difficulties. Let’s show them rainbows and butterflies! Why not?! It’s not perfect, but remember this:

No Life Is Perfect No Matter The Neurology.

Pick Your Poison

Because my son is autistic, I got the distinct feeling Nursie wanted to relate to me through it. I’ve had people do that before – they know someone who knows someone who has a child with autism. Yep. Got it. But Nursie was adamant that I know how informed and aware of autism she was by letting me know that not only does she have a friend whose child has autism, but that her very own daughter has autism! Yet, she didn’t want her daughter to know…? I’m a complete stranger and she wants me to know that she is cool with autism, but she doesn’t want her daughter to know?! Interesting…

I’d like to know how that charade works out for her.

I do not believe people should walk around with labels slapped on their forehead or have labels at all for that matter. I understand they are used at this point in time, in certain situations, but I’m speaking of everyday life. Unless you want to share your neurology, your disability, a super-ability, an inability, an extra-ability, etc… then your business is your own and no one else’s.

However…

When you do know something about your child’s neurology; When you know something important that can change their perception of self, self-image, self-worth, self-esteem and help them understand a very important part of themselves that will help them navigate the NT world in a fashion more suitable to their way of experiencing things… Why wouldn’t you tell them? My guess…

Because for many:  Autism Awareness  =  Fear

Society is still scared to death of autism because of those who control the airwaves. And these are NOT autistic voices, folks. The owners of these voices are organizations and celebrities with huge followings that openly use fear and pity to campaign for more and more money so they can cure my son. My daughter. My friends. Me. It is Awareness of the medical model of disability: Autism is a devastating disorder that is lifelong and incurable. Autistic people are victims of this tragedy and these organizations will do whatever they feel is best for us as we suffer - while at the same time working overtime searching for a cure to make sure others like us will never exist (?!!). (Click here for definitions of social v. medical models). Just in case you were wondering, my family and I do not support this medical model. However, being in the field, Nursie probably does.

Ah-ha!

The integrity of the person or source you gather information from is just as important as the information itself.

So do I think Nursie is wrong for not telling her daughter? It’s not my place to say. I don’t know her, her child or her situation, so I can’t comment on whether or not she’s doing the right thing. Am I telling parents to run right now and tell their kids that they are autistic? Would I tell Nursie to do that? Did I tell Nursie to do that?!!

Absoutely Not.

I never tell people what to do in regards to autism. I will tell you what I do. What my family does. But it’s not my place nor is it any of my business to tell others what to do or how to do it. People have to make the decisions that are best for themselves and their families.

I Will, However, Leave You With Something To Think About…

Personally, I wish I had known my whole life. It would have aided greatly in realizing the misperceptions and warped views I held of myself were because I was trying so hard to be something I wasn’t. My internal battles with low self-esteem and forever being ‘not as good as my peers,’ not as successful, not as confident, would have diminished I think. Maybe even kept me from the decades of psychological abuse I inflicted upon myself for never being good enough. For feeling lost and confused and wondering why everyone except me seemed to ‘get it.’ No way of knowing of course, those years are lost… All 36 of them. Things are very different for my kids. My 13 year-old is thankful to know and is growing up with a healthy perception of who she is, not who everyone thinks she should be. My 10 year-old son, while still non-speaking, communicates in many ways how happy he is with his family, his friends, his school, and most importantly… how happy he is with himself. And my soon-to-be 7 year old is growing up with the knowledge that disability is a natural part of life. 

I recently met a lovely person who was just diagnosed, and that person was over 50 years old. I self-diagnosed at 37 and was 39 when formally diagnosed. I know other autistics diagnosed in their late teens, 2os, 30s, 40s and so on. So, if a child is autistic the odds are pretty good that he or she will eventually learn of it. And if parents know and don’t tell their children about their autism, who will? How will these kids/adults learn of their neurology? And if and when these people do find out, what will their self-perception be? Most importantly…

Do you think they will feel ACCEPTANCE?

 

May 8, 2013

Understanding language and social cues is a gem with many facets spinning in the sun, reflecting a light so blinding, at times I have to look away. If it were to slow down, or even stop, I think I might actually see each facet and understand them one-by-one and how they fit together to make a whole. But it doesn’t slow or stop and if I blink, I’ll miss more than I already have.

And that’s what I want to talk to you about…

Missing Out

People seem amazed at the things I don’t get, and I’ll admit, I’m pretty amazed as well. Once something I’ve missed is explained to me - usually in great detail - I get it. And I, too, find myself wondering why I didn’t get it in the first place. Just thinking aloud, but I wonder if it’s one of those things that has people thinking that autists are lost in their own world. And I’ll admit I love being inside my head, I’ve talked about it before, but I’m not lost. Far from it. It’s just the subtleties and unspoken language that are so prized in our society are the facets of the spinning gem that I can’t seem to focus on! I am not subtle. I am not an expert in unspoken language, body language, nuances or ‘wink, wink, nudge nudge.’ After four decades, I’m still not even a journeyman. I am

forever an apprentice on the path to communication.

Subtlety Is Not My Thing

If you have something to say to me, then say it. If you choose to be mysterious because you think we are sharing a private moment, 9 times out of 10 you will be wrong. That knowing look on my face is me trying to mimic the look on your face and in most cases is meaningless.

I will always speak to you honestly. I will not lie - the one small exception to that rule is the ever-popular ‘white lie’ which I force myself to tell at times for decency’s sake. Other than that, you’re going to get the god’s honest. At times you will not like what I have to say, so I apologize beforehand because I have been told before that my honesty can be hurtful. You must understand that I do not speak in this manner to inflict pain. I actually do it because I don’t want to hurt you! And being told the truth is exactly what I expect from you, too. I am always amazed at lies, because at the end of the day I find lying infinitely more hurtful than the truth. It’s why I opt for honesty right out of the gate.

In My Case:  Why This Autistic Person Is Brilliant One Minute And Unable To Screw In The Proverbial Lightbulb The Next

I am an intelligent human being… 

All evidence to the contrary upon entering the Neurotypical Land of Communication and Socialization. I can go from published author and ‘geeky fan of all things neuorscience’ to ditzy blonde – zero to sixty in no time flat. Why? Because if you are speaking in my areas of special interest: Writing, blogging, Autism, neuroscience, disability rights or sports (especially American football)… then you’ve got me! Or I’ve got you as it were, as I can talk/listen for hours on those subjects and have been known to do so.

* I was invited to give a 1 hour and 30 minute presentation, including Q & As to a local autism support group. I was at 2 hours and 45 minutes when they  had to call a stop to it [Note: I was not blathering on, but the presentation became interactive and the Q & A quite detailed. I couldn't help myself, there was a lot of learning going on!].

If you are, however, looking for engaging, light-hearted conversation, I’m not your girl. As a matter of fact, when people approach me and begin small talk, the only thing going through my head is:

Why did this person approach me and begin small talk?

And I’ll completely miss what is said to me, because I’m befuddled as to why the interaction is taking place at all. Which only adds to the appearance that I’m a flake. It wouldn’t occur to me to walk up and speak to someone unless I was in need of information that they could provide. So then my mind drifts off in that direction as well:

What does this person want from me?

This is seriously what it boils down to:  I am under the impression that if someone speaks to me they want something. Luckily J is usually with me, and he handles the interaction while I look on, completely detached from the conversation. I do, however, smile and nod intermittently lest I be thought rude.

At A Loss

So what is it about polite conversation that leaves me at a loss for words? Well, there’s:

• Me trying to remember to make appropriate facial expressions
• Me trying to remember to maintain eye contact
• Me trying to focus on the person’s words and not the minute details of their face
• Me wondering why this person has chosen to talk to me and what they might want
• Me trying to remember whether or not I’ve met this person before
• Me trying to remind myself that it is a compliment that this person wants to chat with me
• Me trying to relate to what they’re talking about by thumbing through the catalog of ‘Appropriate Responses to Small Talk’ in the library that is my brain
• Most importantly: My brain is almost always ‘otherwise occupied,’ so chit-chat can be the nails on the chalkboard that wrestle me from my thoughts

After all the trying to remember, trying to relate and wondering why, I find myself overwhelmed and irritated, and not at all in the mood to converse. I’m so busy trying to answer my own internal questions: Why is this person talking to me? What does she want? He’s paused in what he’s saying, is it my turn?  that I’m completely unable to respond appropriately to the person who is speaking to me. I am playing all the rules of socialization over and over in my head and completely missing what is being said!

I’m not always like this. People I know really well, or consider good friends or that just happen to ‘get me,’ I converse with easily… well, easily for me, that is. I always feel my end of the conversation is lacking. But these friends are kind and they listen attentively, even though when thinking on it later, they were probably quite bored (giggling)!

Nonverbal Moments

In extremely stressful moments, or under enormous amounts of pressure, I actually experience what I call ‘Nonverbal Moments.’ I do not have a speech or language impairment, and speaking itself is easy for me. However, there are certain things that trigger a dam, if you will, between my brain and my mouth.

If someone speaks to me in a way that I find controversial or offensive - no example here just think of something that would shock your system and prepare you for battle - it’s as if I lose my ability to communicate with words. When I am monumentally offended by something the dam goes up. I have a seemingly infinite amount of words gushing out of my brain ready to cause great harm to the person before me and… Absolutely nothing comes out. Not one word,

Not a peep.

I can stare at someone in complete rage and it’s as if I have lost my ability to speak. It can last for many minutes, and sometimes longer. And it’s awful. And I have a horrific temper that, after years of work, is now easily controllable. I am far from a saint, though, and have been known to recover from my nonverbal state only to deliver in a calm tone, devastatingly truthful information to the offensive party with a slight grin on my face and expressionless eyes. Generally reducing said party to tears.

That is not the person I want to be. So…

Generally, as a rule, I don’t engage with offensive people who look to spread their negativity like a virus, so these incidences are rare indeed. My rule of thumb these days is to walk away in the middle of their speech as if they don’t exist. People like that are looking for reaction and hate nothing more than… no reaction at all. It is socially frowned upon to walk away while someone is speaking but, being autistic, I find it rather easy. I operate in self-preservation mode so if there is something that is going to upset me, I head it off at the pass. My nervous system cannot handle people talking on offensive subjects or speaking to me in an inappropriate manner.

So I leave.

The desire and ability to socialize and communicate is innate in most, and they hone the skill with seemingly little effort and remarkable ease. For the rest of us, while we might want to engage, it is a perplexing, frustrating and exhausting task that we work at continually. And while my skills have definitely progressed steadily over the years, I find I am still a firm C- in

the Art of Conversation.

 

 

 

 

May 5, 2013

I grew up believing my emotions were scarce. That my feelings were hard to come by. That I was the coldest, hardest person on the planet. That I was bad.

Unlikable. Unlovable.

For those of you just joining me, I was a late-in-life ASD diagnosis. Basically, for a little over 36 years I felt like I was not worthy of friendship, well, maybe at times, but definitely not worth loving. Like I didn’t deserve kindness from others because there was no kindness in me.

Why?

Because for 36 years I watched human interaction. I observed relationships between and among other people and I didn’t get it. I acted like I did, and I was really good at it. But I didn’t get it at all. People looked so happy, or sad, or angry, or excited about… Everything.

So much drama!

So full of joy and wonder at the smallest things:

• flowers blooming
• babies cooing
• leaves falling
• parties
• engagements
• impending parenthood

It was really strange. I saw these intense - to my way of thinking - reactions to life occurrences, and I just didn’t get it. What was all the fuss? What was the big deal? Flowers bloom every spring, it’s nature. Leaves fall from the trees in autumn, it’s what they do. So I could never quite relate to people’s feelings or understand what I considered to be their over-emotional responses. And because of this, I always considered myself unemotive.

Unfeeling.

Take for example, relationships. A friend’s boyfriend would break up with her and she would be a mess. Devastated. Crying, angry, forlorn, hurt, so many emotions from such a thing. So he didn’t want to be with her anymore, what’s the big deal?

Move on.

I never really had boyfriends, not until I got much older. One or two may have broken up with me, but it didn’t affect me much because of my detachment issues which I talked about here. I just understood it as being over. It didn’t matter to me why. I didn’t feel jealousy or loss. Loss of what? Someone who doesn’t want to be with me? It would seem to me that’s a gain, but I know my perspective is considered to be a bit off (winking).

Then people began saying things about me. Calling me names:

• cold
• heartless
• hateful
• insensitive
• ruthless

And I began to believe them. I thought they were right and that the things they were saying were true. How could they not be? I didn’t feel the way they felt. I didn’t react in the same manner they did. I was numb to them – I found their emotions to be illogical, uncalled for and extremely anxiety-inducing. I was frustrated with their care and compassion. I couldn’t stand what I perceived as weakness.

I was numb.

But Then…

Something occurred to me that was later solidified by spending several months reading blogs authored by autistic people. There was a pattern. I found myself reading about their feelings and emotions. And I was confused. Autistic people aren’t big on the whole ‘feelings thing!’ Right?! I mean I’ve been observing NTs my whole life and there’s no comparison! No correlation! So what were all of these autistic people talking about? I thought I’d found home, but here they were talking about their lives and how they were richly colored with a variety of feelings and emotions. Do I not belong here, either?!!

And then I would get

• irritated
• confused
• angry
• stressed
• nervous
• anxious
• sad

…reading about autistic people deeply feeling their emotions. How come I wasn’t? I knew I wasn’t completely devoid of feelings - I do find I don’t experience sympathy and empathy as strongly - but how were all these people, both autistic and non-autistic, feeling so deeply?

And then I began re-reading my blog. And parts from my book - searching for the feelings. And while I wrote about not experiencing emotions as deeply, I was in fact describing the very feelings I felt to my core when hearing of others’ feelings.

?!!

I spent 36 years trying to experience emotions as a NT might, and I always came up short. I was feeling - Deeply. I was experiencing emotions - Greatly. Just not like NTs do. And that’s why

I was a failure.

I was incapable of expressing emotions the way NTs did, therefore I wasn’t experiencing feelings either. Right? Obviously something was wrong with me. I tried so hard to be and feel and act like something I wasn’t, so the only possible outcome was failure. Not on the outside, of course, I was masking big time, which I talk about here, so I fit in just fine. But on the inside I was

F – A – K – E

And I hated myself for it. And I hated that everyone could feel and I couldn’t. And I hated that there was yet another part of me that was lacking - that was less than everyone else. And I became angry because I thought everyone else must be faking it, too. And then I was just… Angry.

All the time.

A New Chapter And ME.

I self diagnosed when I was 37. At 39 I received a formal diagnosis of Asperger’s Syndrome. I did a lot of reading and research on autism because of Bella and Bas, too. But it took reading the information from autistic people to discover I am not devoid of feelings, I just experience them differently than the NT expectations I kept trying to live up to!

Epiphany!

I don’t see things the way non-autistic people do, I don’t experience things the way they do, so why on Earth would I expect to feel things the way they do?!! Well, because I didn’t know differently. I was an autistic kid raised into adulthood as a NT. I grew up in a world that I never fit and that never fit me. I learned feelings, emotions and the reactions to them, by observing non-autistic people for more than three decades and trying to mimic them. I didn’t know it wasn’t suppose to work that way. That my feelings were suppose to come from within, not be taught by outsiders.

The most gratifying part was accepting that my feelings had always been present, and that they were valid and appropriate for ME.

If I were to continue comparing myself to NTs, I would always come up short. Just as they would come up short when comparing themselves to me. So I don’t compare myself to NTs. And I don’t let anyone do it to my kids either. What would be the point? I’m autistic and I want to be. Am relieved to be. My kids will grow up autistic because they are autistic. I will not raise them to fit a societal ideal. To force and bend and shape them so that they may appear outwardly ‘normal.’ So they can pass. Why? So they can spend half a lifetime wondering why they’re not worthy of true friendships? Of love? That they’re not good enough, because they were raised believing their feelings were inappropriate and their emotions non-existent? That they would have to deny what is a natural way of being by working overtime to blend? And by trying to meet unrealistic expectations? Just like I did?

No.

 

 

April 30, 2013

S.R. Salas Autism Blog Celebrates 1000 Ausome Things #AutismPositivity2013

 

“Diagnosed by Professionals. Learning from EXPERTS”

*This post was originally published on April 24, 2013

 

I know a lot about Autism Spectrum Disorders

I’ve read many articles, some books, conducted countless hours of internet research and spoken to many knowledgeable professionals on the subject. I was even diagnosed by one of them - one of the professionals that is. I can assure you I received lots more information at that final appointment. Most important of which, I suppose, is that I am autistic. I had self-diagnosed two years before receiving my official ‘paperwork’ so no surprises there. And, if you’re joining me for the first time, my diagnosis came after my son’s and shortly before my daughter’s. So, yes, two of my children are autistic, as well. Being autistic for 41 years, and raising - and at times homeschooling - two autistic children in addition to all the research, I will have to say…

I know a lot about Autism Spectrum Disorders.

Okay, So What’s Next?

I had my diagnosis, my kids had theirs, our suspicions were confirmed. So now what was I suppose to do? I mean I’d read about all I could stand to read, ad nauseum.  I’d watched some documentaries on the subject and I had copious internet hours logged. And this wasn’t something that took place over several months. I did this for a total of four years. All this and after a certain point, I couldn’t actually find anything I considered helpful. I mean they all said the same things a thousand different ways:

‘These are the warning signs and red flags, symptoms and behaviors present in Autism Spectrum Disorders’

We’re Past The Diagnostic Stage, So Now What?

I was diagnosed with autism. Check. My daughter and son were also diagnosed with autism. Check. Check. I had been given a boat load of information on Autism Spectrum Disorders, what they were and how to cope. And that was suppose to do what for me?

What am I suppose to learn from a definition of stimming? That I stim?

Well, I already knew that.

Was I suppose to learn that I have difficulty with social interaction? That I have sensory integration and auditory processing impairments?

Knew that, too.

Was I suppose to learn that I’m not big on eye contact; I prefer things to people (true to an extent, but not always)? That I have difficulty reading social cues, facial expressions and deciphering figurative language?

Knew those things, too.

How about that the underlying feelings associated with Autism, more specifically Asperger’s Syndrome is irritation, frustration and anger.

You’re kidding, right?

Thanks For That! 

I read this same information over and over again. Added, of course, to the long lists of deficits, delays and things we are considered incapable of. So, I did what any intelligent human being would do…

I Stopped Reading It!

I wasn’t learning anything about life with autism and that’s what I wanted to know about. I didn’t need to:

• Know about behaviors and delays - Been living them for years.
• Know that I stim and why - Been there, done that, still do it (and love it)!
• Know that I’m not big on eye contact - And?!!
• Be told that social interaction is difficult - Yep, got that, too!
• Be told that I’m aggravated a lot of the time - I can assure you I know that!

That’s an extremely abbreviated list, but you get the gist. You know the checklists, you’ve read them, too. The thing that bugged me was that all of the information I was reading was from non-autistic people. What they were telling me about my disorder and what I needed to do to be better (or at least act better).

I Felt Like I Was The Only Autistic Adult On Earth (besides Temple Grandin, of course – she was the only autistic person I was directed to by the professionals)!

Adults With Autism – Where Are They Now?

Everywhere. But not one single professional, educator, media source, book or article told me that. Again, Temple Grandin was always brought up. And while her stories, insights and ways of thinking were extremely helpful, she is only one autistic person. And she lives across country from me. And she is world famous.

Not very accessible. (I did get to attend one of her presentations once and she was wonderful. Great sense of humor! And she did happen to read and endorse my book, Black and White, so she is pretty awesome)!

So That’s It, Huh?

Me and Temple. Billions of people in the world and Dr. Grandin and I are the only adults with autism?!! 

Then something happened. I came out of my four-year-long, semi-state of seclusion, which I talked about here. My perfect autistic bubble was bursting. There were school issues. Social issues. Behavioral issues. Nothing bad by any means, but enough to irritate. Enough for me to peek from behind the curtain and begin asking…

Why in the hell is everyone being so ignorant?!!

Why don’t these people understand how I think? How I feel? What I’m saying? Why is everyone being so stubborn and trying so hard to make me mad? Why do I keep telling everyone over and over how best to work with my autistic children so they will succeed, yet they keep ignoring me?!! Can’t they see they’re doing it all wrong?!! Why is everyone bitching about how difficult and exhausting autistic people are, when the NTs are the ones causing all the problems?!

(**sharp intake of breath as realization kicked in**)

Opening Up

In 2011 I gave my first presentation as an autistic adult to a group of non-autistic parents, professionals and educators. When asked if any in the room had ever met an autistic adult, not one single person raised their hand.

And my fate was sealed.

I began meeting with parents of autistic children. I met with educators and professionals. And I wrote and published my first book in December 2012. The same time I began Blogging. The same time I accepted that for life,

I am an Advocate.

It is my responsibility (and a privilege) to talk about autism. To share my experiences and tell my story because if I don’t, then non-autistic people won’t know. So I opened myself to social media. I had never done so before because I was terrified of the public. Of losing my privacy. Of putting myself out there for all to see. But I did it now with ease because by not putting myself out there, I was allowing the autism bashing to continue. I was saying it was fine that my kids, myself and other autistics were considered less than non-autistic peers.

And it wasn’t.

Social Media And Why It Is The Most Significant Thing To Happen To Me Since Diagnosis

Four years I spent studying neurology. Four years I read and researched Autism Spectrum Disorders. Desperately looking for information that would mean something to me. That would make me say “I’m home.” That would lead me to people that made me feel like I belonged.

I spent four years reading/listening to the professionals in the various and assundry fields dealing with Autism Spectrum Disorders and not once did I feel a connection.

I spent less than a month using social media and by entering the right circle, a door was opened to other people like me. Other autistic adults. And other non-autistic adults, like J, who value autistic people and the contributions we make. I have met Advocates. Self-Advocates. Activists. And I feel more connected to these people than I have to anyone (family aside) in more than four decades. I am meeting autistic people. A lot of them. And I am talking to them, listening to them and relating to them. I’m connecting. Through all of the stories and information sharing, I am learning of the very, very many ways we are alike. And at the same time, I am learning of our differences. And it is… Amazing. By connecting with other autistics, I have learned who the real EXPERTS in autism are…

A U T I S T I C    P E O P L E

 

April 29, 2013

Since I began to blog a few short months ago, and since joining in the social media frenzy: Twitter and Facebook (which I am still not using properly, but will eventually get around to figuring out), I have met a lot of really great people. I have made a lot of connections that I am actually thrilled to have made. It is a new and very different feeling. I rarely connect with others whether it’s because I just don’t want to, or that spark of interest is just not there. Or, most likely, we haven’t a thing in common.

Merriam-Webster tells us that:

Connection is the act of connecting : the state of being connected: as

Connection

It has always been a slippery slope, this idea of connection. The word itself suggests an idea of permanence that actually frightens me just a bit. When you connect with someone you do so for different reasons: friendship, romance, ally, social circles, career, commonalities. You know going into a relationship why you are entering into it, you can only speculate as to why others enter into the relationship with you.

This is where it loses its shine to me.

I have difficulty discerning what others want from me. I am very blunt to put it lightly and expect the same from others. I say what I think and usually (unfortunately) without reservation. I know what I want from people and usually it’s information-based. I say ‘usually’ because there are instances when I meet people (virtually or in real time) and like them immediately because of their intelligence, sense of humor, humanity, etc…

Now How Much Longer?

How long do we maintain connections and at what lengths should we go to maintain them? Which ones are worth it and which ones are not? I do not have many connections, I never have. Not deep ones anyway. Superficial ones, of course, when I was much younger. A time when anyone who crossed your path became a ‘friend.’ A time when I welcomed any attention that came my way because to not accept was rude. Manners in polite society dictated that you were cordial and open to any and all offers of friendship. No matter what it did to you physically and psychologically.

(I had so many ‘friends’).

A Natural Need to Connect With Others and Form Bonds

… Is not a big part of my neurological make up. It’s not missing, I do like to connect and ever so much more via social media. It’s  just that I don’t look for people to connect with and I’m always suspicious of those who want to connect with me. What is it that they want? What do I have to offer? I can never think of a single thing, so in my mind this person wants something that I’m more than likely not willing to give. They want to get to know me. To be a part of my life. To be friends.

Making friends for me is extremely easy. Maintaining friendships for me is beyond difficult.

I cannot be a good friend to someone who wants to talk on the phone. Or drop by my house. Or go shopping and do lunch together. I cannot be good friends with someone who wants to spend a lot of time with me. Vacation together, set up weekly play dates with the kids, etc…

It’s too much.

I require quite a lot of alone time. Friendships are demanding, taxing and exhausting. I have a few good friends and we have remained so over the years because they understand my need to withdraw at times. They openly and easily accepted the fact that I am autistic and the differences that go along with it.  They accept that they will not see or hear from me for months because it is necessary for me. They understand that being friends with me will be at odds with the normalcy of traditional friendships.

And they kill me with their compassion and understanding.

I want to yell at them: “Hurry, run from me while there’s still time!” I even tell new acquaintances up front that I’m not a good friend and they’d be better off looking elsewhere for companionship.

They never listen.

People are drawn to me. J says there is something about me that makes people want to get close. That makes them want to tell me their deepest, darkest secrets. And they do as I listen raptly. And I never tell anyone. I wouldn’t dare. But I need to be alone. And I shun their invitations. And I won’t return their calls. And they still want to be my friend.

And I don’t know why.

Where Am I Going With This?

I had to go to a friend’s birthday party this evening. Some of you know about it already because I Tweeted a quick poll asking my autistic friends whether or not I should go. I had every intention of going, even though I was anxiety-ridden just thinking of it, but for the first time in my entire life I had autistic friends to ask.

That was nice.

Anyway, I’m driving to the restaurant where the party is to take place, just wanting to cry. For those of you who read my blog you know that crying is a rare thing for me – it happens of course – just rarely. But I was so worked up about the evening ahead that my eyes were tearing up.

Ugh! I hate weakness in myself

Crying itself isn’t a weakness as long as it’s someone else shedding the tears. Crying for me is usually reserved for moments of other people’s compassion towards me. It’s a long story, but I talked about it here if you would like to read it.

Why Was I So Upset?

The ladies I was having dinner with, most of them anyway, I have known for years. I don’t see them often, probably less than 10 times per year, and they live right down the street from me. They know I’m autistic and it doesn’t matter. However, there were going to be a few new faces. And we were meeting in a noisy restaurant – one of those Japanese Hibachi places that are fun if you don’t have sensory integration issues. You know… like I do:

• Spatulas scraping on griddles
• Chef slamming salt and pepper shakers on the table and tossing them in the air
• Bright, glowing flames shooting up from the oil on the cooking surface
• Chef flipping food at people’s plates or for them to catch in their mouths
• Several other tables with the same shenanigans going on
• People talking and laughing

And honestly, I’ve eaten at those places before and they really are great. It’s just this particular evening, it was just too much.

So, Again, Why The Tears?

Because of the connections others make so easily. Because I have known most of these women for years and was present when the connections began. And they maintain them with ease. I sit with them around the hibachi grill – I’m on the end of course – and I take in everything. The way they talk and laugh with an intimacy alien to me. It does make me a bit melancholy, not because I want the closeness – I’ve had that with friends before – but because I see a way in which I come up short. I see something that makes me feel uncomfortable and out of place – something that verifies my belief that I don’t belong. The bonds these women share have obviously strengthened over the last several years – my bonds to them have remained unchanged. Stunted. And the knowledge that they will more than likely maintain their bonds for many years to come, and in some cases, maybe even ’til the end adds to my awe and feelings of inadequacy. And the fact that the connection means something to them.  It is nothing to be trifled with nor is it a bond easily broken.

I have been known to break bonds and dissolve decade-long friendships with a phone call.

I did this very thing right before a move once. What would be the point of maintaining the friendship? I do not say this with pride. I’m not trying to be tough. I have been called many things in my life for this very reason – none of which I choose to share. Every bond I’ve chosen to break, every connection I have disconnected was done out of logic and common sense. Not one single time did I ever take into consideration how the other person felt. I didn’t even think about it. It never once occurred to me that I might actually be hurting someone else by doing this.

Because if the tables were turned and someone did that very thing to me, it wouldn’t matter.

And I have had this done to me. And it didn’t matter. Well, wait, that’s not entirely true, it did matter and I was hurt for a bit. I had feelings of panic intertwined with confusion. An awful feeling really, so I quelled it by assuring myself that the person had good reason and obviously severed our tie out of self-preservation – something I know a great deal about. Therefore, I quickly concluded that the person was finished with our interaction and I was no longer a necessity in their life. Although I never asked. It didn’t occur to me to question their motives, because it was none of my business.

My  D i s c o n n e c t

 

 

April 22, 2013

Last Thursday I presented on Autism to a group of parents, teachers and administrators from one of our local public schools. It was at the elementary level and, while I love presenting to all ages, there is something that excites me about the parents of younger autistic kids. It’s the way their eyes open a little wider and that quick intake of breath as they learn that not only am I a parent of autistic children, but that I am autistic, too. It’s the light of hope I see begin to flicker as I speak and watch grow stronger as I conclude my presentation. And while it can be a bit disconcerting, it’s also their tears. Because I offer them hope. I help them to see that the great things they wanted for their child, while they may have changed, can still be great.

I urge them to take back the power they handed over when their child was diagnosed with autism. They know what they’ve heard or read about autism. They know what the professionals have told them, they’re well-versed in it. Yet, they see standing before them a successful human being. An oxymoron because they have been told again and again that disability does not equal success. Many of us are told in not so many words that

our kids won’t be successful.

That they are burdens for society to carry. That they can’t possibly thrive like their non-disabled peers. Yet I stand before them to their disbelief. You see, people like me (like my kids) don’t happen. People with autism don’t go to college. We don’t get jobs. We don’t get married. We don’t have children. People like me are one in a million. We’re long shots. I, like my daughter and my son (who I posted about here) beat the odds. We’re medical miracles!

No we’re not.

We are intelligent, capable individuals that require love and support to thrive, just like our non-disabled peers do. Accommodations are different and may be much more than others, but they are required and deserved just as our non-disabled peers’ are.

Me

In my case I grew up very independent of familial direction. My Mother, working as many as 2 and 3 jobs at once, had little time for parental guidance. There were no role models, I had to figure everything out on my own through observation. I am a keen observer and I also unknowingly depended a great deal on others, like my brother T.G., to smooth the way. T.G., and others like him, were my Navigators, which I told  you about here. That being said,

mine was a path I do not recommend.

I had no choice. Society wasn’t even close to ‘Autism Aware’ back in the 70s, and on top of that, I had no way of knowing how to verbalize my stress, anxiety, fears, anger, frustration – and all the many other things that I thought were wrong with me. So I remained silent. I had no one to tell me that there was nothing wrong with me. I had no one to tell me that I was just different, and that different was okay – good even. I was forced and bent and shaped to everyone’s will but my own and, psychologically-speaking, it was a hard lesson learned. Again,

mine was a path I do not recommend.

For My Kids It’s Different

Very different. Once J and I realized two of our children were autistic, we began a family education. I researched it to death as I am wont to do – mostly the neurology of it – and then we talked to our kids about it. We discussed with them over time what autism is, and we will continue to do so. It will be an on-going conversation throughout our lives. We talk about autism as a neurological difference, one that can make things challenging, but one with many positives and gifts. We talk about autism in our home as if it’s just an everyday part of life,

because that’s exactly what it is.

Are there difficulties in regards to autism? Of course. And we talk and work through these things when they arise, and beforehand if we see them coming. But we also talk to our kids about obstacles we can’t overcome because that is also a part of life. And those are the things we work around. One thing we do not do, however, is listen to or rely on information from professionals that emphasize the negatives of autism and what our kids will never be able to do because they have a disability.

So Why Do Parents Of Children With Disabilities Think Their Kids Have No Future To Begin With?

Because that’s what we’re told from the moment of diagnosis. We’re given medical information, behavioral information, psychological information, support and grief counseling information and let’s not forget the lists of our deficits and things we are thought incapable of. What we should be given is something more like what my friend Ariane Zurcher ( Emma’s Hope Book ) talks about in her post: “What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism.” Please read Ariane’s post, because that’s the information we should leave the doctor’s office with. But it’s not is it? Instead we are met with these words (or something similar):

Mr./Mrs. _________ I am so sorry to tell you that your child …

I can’t think of a single positive thing that can come from a statement like that. And you will not be leaving the office with positive, encouraging information like Ariane’s. You will leave with pamphlets, brochures and internet sites about a neurological disorder, its signs and symptoms, and how to cope with a life-long devastating disability. You will leave feeling your child is broken and irreparable.

But most damaging is that you will leave feeling that your child has no present and no future.

And it’s wrong.

If I do not speak up, If I stand by and continue to let this happen, then I am agreeing in my actions with what they say.

And it’s wrong.

I have a responsibility and an obligation as a person with a disability, and as a parent of children with disabilities to speak out. To talk to families, caregivers, educators and professionals. To make them understand that my success and that of my children is not the work of miracles. That it’s the work of love, respect and belief in another human being no matter their differences. That it is presumption of competence. That it is seeing past a disability to the person standing right in front of you. That it is

Autism Acceptance

 

 

April 16, 2013

VBPD – PIP

I have mentioned many times the amazing advocacy program Partners in Policymaking (PIP) through the Virginia Board for People with Disabilities (VBPD). I cannot say enough about the program itself. The people I’ve met: Current Partners, Alum, Speakers both local and national. And the knowledge I’ve gained: the history of disabilities, the disabilities rights movement, ADA, IDEA, advocacy, self-determination, CILs, presumed competence, inclusion… And the list goes on-and-on. Being autistic and the parent of autistic children, and a family member and friend to others with disabilities other than autism, I thought I was well-versed in the field of disabilities. After my Partners experience, what I knew going into the program was the tiniest tip of the iceberg. A snowflake really. I am happy to share that I will be graduating in May, and the knowledge and information I will be leaving with is immeasurable, but at least the tip, the surface area above and a good chunk of the iceberg below sea level

What’s This All About?

I wanted to share this with all of you because VBPD Partners in Policymaking Class of 2013-14 is accepting applications! The deadline has been extended to May 10th, so there’s still time! Below is a quick overview of the PIP program and application requirements:

• Individuals participating in PIP attend advocacy training, resource development, and skill building workshops led by state and national experts.
• Topics covered include the history of the disability rights movement, self-advocacy, independent living, employment, building inclusive communities, natural supports, legislative advocacy, assistive technology, communication, team building, and much more! VBPD covers all expenses for participants’ training, lodging, meals, and travel.
• The group of selected participants, consisting of parents and self-advocates, will build networks with state and national leaders as well as one another. Participants will be educated on best practices and current trends in many areas. Program participants attend and actively participate in eight two-day sessions, from Friday afternoon and to late Saturday afternoon, in Richmond, Virginia.
• Application and selection as a participant for the Partners in Policymaking (PIP) program requires a substantial commitment of time, motivation and energy. If accepted, individuals must attend eight two-day sessions between September and May. Each session begins on Friday afternoon and concludes Saturday afternoon. Participants meet competencies by agreeing to complete homework, class assignments and one major project.

Eligibility

To be eligible, participants must be a resident of Virginia, have a developmental disability as defined by the Developmental Disabilities and Bill of Rights Assistance Act or be the parent of a young child with a developmental disability. For further information, click here and scroll down to the FAQs.

Application Process

There is an online application here under the subheading ‘Become a Partner in Policymaking.’ In addition to the application, you will need three references. If I know you, and you are interested, please contact me and I will be happy to provide a reference and am already doing so for one possible candidate!

The Pitch

With the current state of our economy, and budget cuts affecting special education, Medicaid, ID/DD waivers (and growing waiting lists) and a variety of disability programs, we need people working toward positive change; people who want to make a difference.

We need Partners. We need Advocates.

We need YOU!

If you are a person with a disability or the parent of a child with a disability, I urge you to apply to the PIP program – it was set up for people like you (and me)!  We understand what it’s like to either have a disability or to raise children with disabilities. And it’s important to share with others the difficulties we face, not because of our disability, but because of the systems and programs in place that make things difficult for us! It is important to share our personal stories so people begin to see us as valuable members of society, not statistics!

The information you receive in the PIP program is integral to being an effective advocate for your children and for yourself, and for ALL people with disabilities.

Bonus

And I thought I would leave you with a little incentive…

The food is delicious. The hotel accommodations are dreamy. The treats and snacks, coffee bar, tea and beverage service provided right outside the conference room (the whole day) are wonderful. AND IT’S ALL FREE!

So What Are You Waiting For?!!

 

April 16, 2013

Rest

Nap

Sleep

What lovely words. One of each please!

Sleep has always been difficult for me. It’s been that way since I can remember. Wide awake and embracing the dark. I was never afraid of the dark as a child, it was never very dark to me. The littlest light emanating from the most obscure source lit my room like a beacon. A streetlight made tiny by its distance from my window (a football field’s length at least) was like a search light. The shaft of light creeping in under my door each night illuminated everything in my room like a showcase of prizes to be won. The minutes ticked by turning into hours. My anxiety grew with the passing time as I would calculate how much sleep I would be getting. Eight hours. Seven hours. Then six. Five? Please, please at least give me 5. I have a test tomorrow and a paper due. And math, god you know how I hate math! Wait. What did you say? Four and a half? You’ll give me four and a half hours?

Done!

It wasn’t just the light that kept me awake. I mean, it didn’t help, but it wasn’t the mastermind behind my inability to fall asleep. Light was merely a minion. Like sound or texture. The mastermind was, of course, my autistic brain. You’ve met her before, I speak of her often. She’s extremely intelligent, capable of unbreakable concentration, hours on end of reading, tireless research, and without my knowledge – neuroplasticity.

And she never stops.

I’m speaking figuratively (didn’t know I could do that, did you) as I know that were my brain to ‘stop’ I would exist no more. What I am trying to say is that my thought processes continue at such a loud roar and ridiculously frantic pace, that rest, relaxation and sleep have always eluded me.

Is it an autistic thing?

I don’t know for sure. However, Bella and Bas have always wrestled with sleep demons. I can remember finding Bella, 3 years old, out of bed at midnight – wide awake and searching for me to come and lay with her. And I would… for hours. We didn’t talk to each other, giggle or whisper. We both lay there wide awake and waited for sleep to take her. And Bas? I can remember waking at two or three in the morning almost every night, hearing him giggle in his room turing his fish music on and off. Both Bella and Bas have always slept in complete darkness, just like I did. I don’t think it’s actually dark to them either. To this day it still takes Bella an hour or two to fall asleep at night, but Bas, as usual, wins. He will easily lay in bed in the dark for an hour or so then get up and look at books for another hour or two. Eventually he makes his way back to his room and sleeps.

And through social media I have learned that my autistic friends have difficulty finding sleep as well. I see tweets very late at night, some well into morning, from people searching for sleep and not finding it. And how do I see these tweets so late at night? Well… because I’m not sleeping. At least I see I’m not alone

So now what?

I can’t say. I fought for sleep for decades. Even battled insomnia for a few years in college. And I tried many, many things - too many to list - and to no avail. One thing that did help was having kids – three of them! They exhaust me mentally and physically, but in a good way, because I don’t find my kids in the least bit difficult - Lucky me. I don’t, however, suggest running out and having three kids – these things need to be planned for And it might not work for you!

So what did I learn from my many years of sleep difficulties? What wisdom can I share with you in the war against sleep deprivation?

No Matter What, Sleep Happens…

EVENTUALLY

(sorry. that’s all i’ve got)

 

April 15, 2013

Okay, hang in there guys, we’re almost there!

Testimony at the Capitol this past weekend was awesome! Even though it was ‘mock’ a few Legislators and their Aids were there, which was great! We also had some VBPD Board Members, past Partners Speakers, Advocates and Alum, which was really, really great! Their support was evident in their mere appearance, and even more so in their encouragement of each of us as we approached the podium!  I spoke with one of the House Reps and it seems my testimony got some notice and will be traveling past the mock stage and be seen by some folks that can help me make a difference.

Gotta’ Love That!

Next On The Agenda

As I mentioned, and full details are on my Events page, I will be speaking at Autism Awareness Night this Thursday, April 18. I’m really looking forward to this and hope to see some of you there. My presentations will be directed more towards parents of younger kids, however, I’m always happy to see a familiar face (please remember my face-blindness, I talked about it here ) should I not recognize you right off the bat. I truly appreciate your support and just ask that you re-introduce yourself and tell me where we met

VBPD Partners In Policymaking

Okay, so you know I’m set to graduate next month, which is exciting (and a little sad because I’ve become quite close with my Partners). My Final Project and presentation are due Friday afternoon prior to graduation, which should be excellent as I’m really excited to see what other Partners have been working on! On top of that, someone at VBPD must love me because upon session wrap-up this past Friday, it was announced that the speaker for our upcoming graduation is none other than

Mr. Ari Ne’eman

Well the gods are smiling on me… If you do not know who Mr. Ne’eman is, he is the President and Co-Founder of the Autistic Self-Advocacy Network (ASAN) and you can view his information here. I urge all of you to become familiar with ASAN, peruse the website, bookmark it and visit it often - become a member! I know many of you have young children and may not be quite there yet with the idea of self-advocacy, however, organizations such as ASAN are working diligently to make sure autistic voices are heard and the rights of all with disabilities are not ignored!

To All My NT Parents Out There

I know I say it often, and I’m going to say it again because it’s really, really important…

Listen to Autistic People!

Hear us speak! Learn from us! Read our books! Our blogs! Watch our documentaries!

We are a community that your children are a part of! I can promise you we are working now for everyone on the spectrum, and that ‘everyone’ includes your kids, siblings, parents and friends. I have a blogroll to the right and I urge you to check it out. These are some of the bloggers I follow - some are autistic and some are Parents of autistic children - and I will continue to add to the list because I know there are many, many out there that I haven’t found yet! These people have a lot of valuable information to share with you and they are sharing it freely! I cannot tell you how valuable it is to hear information from the actual source. I learn something new every day from these folks and I’m Autistic!

Imagine what you will learn…