It Can’t Be ME, But It Can’t NOT Be ME
“Could I have autism?” you wonder. “It can’t be me,” you think.
“I don’t want to have it,” you think. Yet you realize that having it would mean everything about your life somehow suddenly made perfect sense.
Maybe you discovered one or more people in your family are autistic. As they start to describe their experiences, parts and pieces of their stories hit a little too close to home. Maybe the similarities are, well, dead on. Maybe as you talk to autistic friends, you realize they are telling you a story remarkably similar to your own. Rather than voice your concerns, you start reading. As you start reading story after story, account after account maybe some acceptance starts to creep into your heart. But just a little bit as you continue to wonder, “Could I have autism? Could this be me?”
You may be one of these people. One of the people who think you “have it.”
If that describes you, know that you are soooo not alone.
Because you are sooo not alone, I have put a packet of information in the FREE Resource Library called, “Should I Pursue an Autism Diagnosis?” with questions and information you may want to consider in deciding whether to go ahead and seek out a diagnosis.
Who Is It?
Even with a bit of acceptance, you continue to wrestle. The stories sound so very familiar, but the picture of autism that as it has been painted in the media and on social networks is so very different from the face that stares back at you in the mirror in the morning.
“It can’t be me,” you think at the same time you think, “it can’t NOT be me….”
It is hard to reconcile all of this input. But when we paint a more realistic portrait of autism, it is not so hard to reconcile at all.
You see, autism is not limited a young white boy holding his head in his hands rocking back and forth or having a “meltdown” (I really don’t like that word, but that is a topic for another day!) at the grocery store and receiving a compression hug from his parent. It can be, but that is a very, very limited picture of it. To my knowledge, it has not skipped over any populations, any ethnic backgrounds, or any age groups. It impacts individuals from all over the globe male and female alike (it actually impacts them differently, I just wanted to point out that males and females have it!).
The coolest and most surprising thing about starting this blog is the diversity of the people who follow it. I guess in part it is surprising because I never really thought about it, but once it was right there, it seemed so obvious. It can be anyone. Huh. Even me.
So if your question is “Could I have autism?” The answer is “Yes, you could, but you will have to take steps to find out.”
Wherever I go when people learn that I am an autist, I’m confronted by people who lean close to me and whisper that they wonder whether they “have it.” It is almost like the 1970’s when people used to whisper about cancer. It is that thing no one wants to have, for which there is no cure, and certainly little or no acceptance. Yet when given a safe opportunity, people will ask whether it could be them just like you may be asking whether it could be you.
When buying my last computer, I was working with a young man with an autism bracelet on his wrist. We got to talking about how we both had autism. There was another clerk helping me who ended up ringing up the sale. Once the clerk with autism left to go help another customer, the second clerk leaned over the counter and shared oh. so. quietly. that he had a lot of the characteristics of someone with autism and then he asked, “Could I have autism?”
In Texas, I had this beautiful, feisty woman who cut and styled my hair for me. She was somewhere around her late 60’s. Super fun woman. She asked what I had been up to, and I told her all about my little autism blog. At her request I defined autism for her. “I think that is me,” she said. “Could I have autism?” she wondered out loud. As she then told stories from her life, she told the classic story of a woman with undiagnosed autism.
Then there was the woman who was going through a nasty, nasty divorce and started seeing signs of high levels of anxiety in her kiddos. She wanted them to go to the psychologist for testing. They told her they would go if she did. “Of course,” she thought, “there is nothing wrong with me.” As the testing continued, she realized that she wasn’t just there to support her kiddos, she was there to get her own diagnosis – a diagnosis of autism.
That woman in the last description was me. Stunning. How can you get to be 44 and find out you are an autist????
So if you believe that this is you, know that you are in good company. Lots of folks wonder the same thing. Lots of folks have gone through the steps to find out whether they are right in thinking that they “have it.”
And yet you wonder what you should do, whether you should find out, who you really ARE.
And that’s the rub of it, you fear that if you find out you are an autist, that you have autism, you will become someone new, someone different than you thought. Someone “disordered” or “disabled.” How, you ask yourself, could you have lived your whole life and not know you are “disabled”????
Could I Have Autism? Is that even POSSIBLE???
See? Momentous is totally the right word to describe the crossroads at which you sit. To find out or to not find out.
Torn between knowing and knowing, you struggle. Yeah, you read that right. Torn between knowing and knowing. Because you so want to know, and you so don’t want to know, but you so need to know. Whoosh. Has ever a decision been more difficult?
You may have always wondered why you were different and finally there may be an answer. But if you seek the answer and obtain the diagnosis, you will KNOW. And that can be totally overwhelming, especially for adults. Being different is one thing, being diagnosably (I think I made that word up, but I really like it!) different is another entirely.
So you think you may have autism. What should you do?
Breathe. It is going to be all right. Whatever you decide, whichever action you pursue.
One note of caution: if you choose not pursue a diagnosis or to delay pursuing a diagnosis, and what you “have” is not autism, but a treatable disorder such as anxiety or depression to name just a couple, you may in fact be delaying your recovery.
But again, if it feels like this decision is a momentous one that is because it is.
Some things to think about:
If you pursue and obtain a diagnosis, you will be the exact same person you were before you knew. Exactly the same person, that is, except you will KNOW. You will not be any more “disabled” or “disordered” than you are right now at this moment. Need proof? Check me out! I am not “disabled” or “disordered,” I am competent, productive, capable and adorable! (Okay, I wanted to add a little humor there to lighten the mood!)
If you get a diagnosis, YOU get to choose what you are going to do with it, including with whom you will share it and whether you need help to deal with it. You get to make these decisions.
You may never need an accommodation or help or knowing may guide you in finding and using accommodations or help that change your life. The need will not be different than it is now, but the availability of accommodations or help may be greater.
I said it before, but it is worth saying again, if you do not have autism, rather you have a different disorder, you may uncover a path to recovery or treatment you never even considered.
A diagnosis may give you the clarity you need to make some changes and move forward faster, to extend to yourself grace for things with which you struggle, and to resolve issues that may arise in your relationships. In short, you may find life gets a little easier. It may even get a lot easier.
Everything you are feeling in making this decision is normal whether it is fear, anticipation, excitement, etc., feeling lots of emotions at this point is totally ok. Here is the thing: If you decide not to pursue a diagnosis and you continue to feel these things, you may want to rethink your decision. The peace of knowing or not may be worth the exercise of finding out.
Deciding not to pursue a diagnosis NOW does not mean you will never get do it. You get to choose WHEN you pursue it; you get to choose HOW you pursue it. Waiting until you are ready (if ever) is okay. You have made it this far, and you will make it farther even without the diagnosis. There is no cure, no magic pill, and no “treatment” for autism per se anyway, though I would argue that knowledge is power. So waiting to seek a diagnosis is not harming you if it is autism you have unless as I mentioned, you are dealing with something other than autism.
Tools to Help You with Your Decision
As you work to make this decision, if you decide to confide in family and friends, you may get mixed reactions to your thoughts. Those mixed reactions can be confusing. Take that input, consider it in the context of your needs and your wants and make the right decision for YOU. If you are really anxious or really struggling to decide, you can even pursue counseling from a more objective source to help you make the decision or to help you prepare for the result. You can totally do this your way at your pace.
There are some online tools that may help you. I can’t vouch for their reliability, but I personally did find them to be helpful. My favorite was the Aspergers Adult AQ test. (Just if you were wondering, I did test in the range to likely have Aspergers (now Level 1 autism according to the DSM V)).
If you want more information on things to consider in determining whether to seek a diagnosis, I have written a guide just for you for this purpose. My “Guide to Girls and Autism” will walk you through lots of information you should consider as you continue down this path. This post also includes links to some stellar lists of characteristics of girls and women I think you will find incredibly helpful!
The Most Important Truth
But for today, I want you to know the following:
A diagnosis may help you, but it will not, in and of itself, change you. You are enough. Just You. Just the way you are.
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