You Have a Right to Mourn

I decided to give up gluten at the beginning of this week. I had already given up most foods that have gluten in them, but I hadn’t completely cut it out yet. In the past six months, I have limited my diet to foods with little fat, oil, sugar, acid, lactose, and sodium content. For the most part it has worked, but I haven’t followed the diet strictly until recently.

Going gluten free was a lost battle for me. It meant admitting that something really is wrong and accepting that it may never change. In a few weeks, it may not seem like a big deal. But it is a big deal right now, which has made me realize something.

I never thought of an autism diagnosis as a big deal. It was simply a name for a set of symptoms that already exist. I didn’t understand the need to mourn or the devastation someone may feel. But now I understand better. Parents don’t mourn the child or the diagnosis. They mourn the inability to hold onto something they wanted to have.

Right now, I am mourning that I may never enjoy pizza again, that I don’t remember the last cream filled donut I ate, that I do not know if I will ever again feel the sensory adrenaline of hot sauce. To other people who haven’t experienced this or who have been living with these problems for a while, it may not seem like a big deal. People who don’t know, who can’t know, or who know all too well, are giving me suggestions and advice, solutions for what they perceive to be my problem. But they all miss the point. I don’t need solutions right now. I just need to mourn.

Give me solutions in a week or two. Tell me what I’m doing wrong and what I can be doing better, just wait until I have had a chance to mourn first. Let me breathe in the reality of my situation for a moment. Let me process what this means and what it changes. Let me not be okay for a little bit. Then you can bombard me with your advice and solutions because maybe then I can handle it.

I am sorry for not understanding the need to mourn before. I am sorry for wanting people to realize that autism isn’t so bad before they are ready to. I am sorry for not recognizing your right to mourn.

You have the right to mourn what you wish could be. You have a right to cry and be sad or afraid. You have a right to not be okay for a while.

And maybe when you’re ready, we can discuss advice. Maybe when you have mourned, we can solve this together. Maybe once you have processed this, it won’t seem quite so overwhelming. In the meantime, I understand your need to mourn. And I respect that right. I hope people can understand and respect mine too.

My Story- Autism

It is difficult to tell my story with autism because I’m not exactly sure what autism means for me or how much of my life it has affected. I felt like a pretty normal kid until third grade. I had a good group of friends that I would spend time with at recess or during lunch. I was in speech therapy because I had a hard time saying the letter “R”. I didn’t feel like therapy made me any different than anyone else though. I went with a few other students and we played games. It just felt like a break from class for a while.

In second grade, I started hanging out with a certain boy in my class. Typical, elementary school crushes, we would sit on the swings at recess and talk. I hardly spent any time with my group of friends because I would be with my seven-year-old crush. The next year, he moved away and I assumed that I could go back to my group of friends and nothing would have changed. Of course, I was wrong. A lot changes in a year. My friends had new friends, a new leader of the group, and new things they liked to do to pass the time.

I no longer felt like I fit in, and set off on my own to find other friends. The thing is, I had no idea how to make friends, how to talk to people, how to recognize facial expressions or know if someone liked me and wanted me around. My first group of friends evolved around the sister of my brother’s best friend. She had been to my house before and so it was natural to gravitate towards her at school. When I left her and that group of friends, I had no leads. I had no one to gravitate to, and not being able to say the letter “R” made it difficult to avoid teasing or misunderstanding.

It’s a pretty simple story and seems to have little to do with autism, which is exactly why it took until seventh grade to receive a diagnosis. People said I was shy; they blamed it on my speech impediment; they said I was lazy or that school was just hard. I don’t even think my family understood. How could I explain something so simple and yet so difficult? In my seven year old vocabulary and social skills, how could I explain that I was still the same person, that nothing had changed about me; it was the situation that changed and I didn’t know how to handle it.

Once I was diagnosed, nothing really changed. I had some accommodations for school work and we focused more on social skills in my speech therapy sessions. It was still incredibly difficult, but I just kept going. That was all I could really do, all I can really do.

Now that I  know more about autism, I am beginning to explore what it means. I’m beginning to explore the differences in social reading, emotional reciprocity, and giving of social cues. I’m not good at it, but I am pretty good at faking it. I guess and then search for clues that I was right or wrong and make a course correction. I think we are all like that. We all don’t fully understand each other, no matter how well we can read social cues. For me, it’s just been more of an emotional and psychological journey.

What I am learning more about and learning to embrace more is the “restricted, repetitive patterns of behavior”- the sensory side of autism, the special interests, stereotyped movements. In my intellectual, black-and-white mindset, it’s not easy to accept these sides of autism. My mind tells me they are wrong, abnormal, different, unacceptable, unforgivable, unlovable. I’m just starting to get past those thoughts, but it’s difficult. It’s difficult to rewrite years of observation, experimentation, and self-experienced research. But that journey is a story for a different day.

Just Starting

I have been writing this blog for a long time. I have been living with autism (aspergers) for a long time. I have been learning how to seem normal for a long time.

What I haven’t been doing for a long time is learning how to be autistic.

It might seem strange that I would need to learn to be autistic since I have autism, but it’s the reality. I have learned to suppress everything that comes natural to me. I have learned not to stim in public, not to have special interests or at least not talk about them like I want to, not to have meltdowns around others.

And in all non-autistic circles, this is all a great success. I am high functioning. I am as close as you come to “cured”.

But… In autistic circles, I feel like a failure or at least a novice. I don’t know how to allow myself to be autistic. I don’t know how to be comfortable with being autistic. I don’t know if I even want to be autistic.

Is there a middle ground? Can I be autistic and normal and different and perfectly me all at the same time? Do I have to choose between living an autistic life or living a lie? Is that even what the choices are?

Like I said, I’m just starting to learn how to be autistic. But it is overwhelming sometimes. I thought learning about autism would make me feel less alone, but in some ways I have felt more alone.

I’m just starting… Just starting to try to find my place in the world. Please be patient. Please be kind. I don’t know where I’m going and I’m just starting a journey to a destination that I’m not even sure exists.

Disability, Not Disabling

This past week I did a training presentation on autism. I had been debating for a long time on whether or not I wanted to reveal that I have autism during that training. My manager was supportive either way, but said that he felt it would be helpful for people to know I have autism in order for them to gain a different perspective on the disorder.

Anyway, long story short, I decided to go ahead and say that I have autism in order to present some pertinent examples during my presentation. And the presentation went really well. I didn’t want it to be about me, but I wanted my story to add to the overall message. And I feel like it did exactly that.

A lot of the managers and supervisors also made comments and told stories about their experiences with family members or employees and that really added to the overall message as well. In the end, the message I wanted everyone to understand was that autism isn’t a problem in and of itself.

We all have problems and things that we deal with, but it’s when we allow those problems to disable us that they become disabling. Autism is considered a disability, but it is only really a disability when the person feels disabled. Feeling disabled means that you’ve lost the hope to try because you don’t feel there is a point when your disability will always cause you to fail. We all live with problems and can overcome those problems to live productive lives, but if we see ourselves as disabled we become a self-fulfilling prophecy.

You Make Me Feel Broken

This post is directed at no one in particular, but is a general response to the way autism is portrayed in society and media.

Yesterday I listened to a speaker who talked about handling rejection. He said that people handle rejection at different layers. At the outer layer, we hear the criticism, but don’t feel the need to change ourselves. At the next layer, we take the criticism personally and feel that we are being attacked in some way. And at the innermost layer, we take the criticism to heart and believe we are flawed and hopeless.

Well… after the speaker finished, I went up and talked to him about this. Because the truth is, autism hits me at the innermost layer. When something that I feel is related to autism causes a problem, I feel flawed, broken, and hopeless.

The other day someone misunderstood me and became upset with me for how I handled a situation. For the first time in my life, I admitted that I had autism not because I wanted to but because I felt I had to. And I felt so broken after that. Because it’s not gone. Autism is not cured and it doesn’t disappear. We just learn to seem normal. But when problems come up, autism is still there. And it cuts me to the core to realize that because I can’t change it. I can’t get rid of autism and the world keeps telling me indirectly, or even directly, how much of a problem that is.

And so, I feel broken. Even though no one has told me that I’m broken, I keep feeling it. Every time I see or hear of a parent who is devastated with their child’s diagnosis or I see videos about “the harsh reality of autism” or someone carries on about vaccines causing autism, the idea that I am flawed becomes more and more ingrained in me. And I can’t help but feel broken.

Changing Autismthoughts

I have come to the point where this blog as it is at the moment doesn’t make sense anymore. The title autismthoughts was meant to reflect thoughts I had about autism and because of autism, and to explain how people with autism might think. I’ve come to the point now though where I don’t think I have autism thoughts. I just have regular thoughts. Yes, I have autism, but does that mean that all my thoughts are autistic?

Having autism is a part of me, like being a Christian or being an aunt is a part of me. It doesn’t change me and yet it changes everything about me. I am not a different person because of the autism label, but autism has been a part of my life that has definitely contributed to who I am today. I am who I am because of autism, but I am not an autistic person or even a person with autism. I am just a person. I am a human being who just happens to be diagnosed with autism.

The thing is, when I started this blog, I needed to be autistic. I needed to explore autism and explore autism within me and try to figure out that part of me that I never really had a chance to get to know before. But now, I don’t have that need anymore. I know who I am and I understand autism within myself to a point that I am satisfied to just be me. I don’t have to have autism thoughts. I can just have thoughts.

So… I may be changing the name of this blog and the direction of it in the next few weeks. If you have any input on the name change or what you would like to see in posts, I’d be happy to receive any feedback from you.

As always, thanks for reading! 🙂

Blaming the Cheese- Part 2

So if we don’t blame the cheese, what should we blame?

If autism isn’t the real problem, what is?

Well, some people believe vaccines are to blame. There’s a heated debate about whether vaccines cause autism and new information seems to be added to that debate every day. The problem is that people are looking for a single solution. Yes, vaccines probably can cause autism, but most likely this is only the cause in a small number of children. And even if it is vaccines, it is more than likely the mercury content in those vaccines. So really mercury poisoning is to blame, not autism.

Then, once you get past all the causes of autism, what is to blame for the hard things that come with autism?

Things like self injurious behaviors aren’t really from autism as much as they are from other things that interfere with autism. For example, a child could self injure because they have a medical problem causing them pain and are either trying to communicate that problem or trying to distract themselves from that pain. Or they could self injure because it focuses their attention on something tangible rather than the intangible anxiety or uncomfortableness of their environment. So in those cases, medical problems or anxiety are to blame.

When it comes to not being able to make friends or being bullied because you have autism, shouldn’t it be society and our skewed ideals that are to blame? If we valued people despite their disabilities or differences, these problems wouldn’t be so prevalent.

 

What I’m trying to say is that blaming autism isn’t always the most beneficial or correct thing to do. Some things are autism, but some things aren’t. Blaming autism for everything that’s hard or any time something goes wrong leads children and adults to believe that they’re broken. It leads people with autism to feel damaged, unworthy, not good enough. Because even when we can hide our autism and blend in, sometimes we still feel autistic and if being autistic is equated with everything negative, it’s easy to extrapolate that to yourself. Then we become broken people and even if you’re a broken person, you still don’t want to feel broken…