More than that, I know it should seem obvious, but many, many people somehow miss the incredibly obvious fact that kids grow up to become adults. That fact combined with the fact that there is no cure for autism means that kids with autism become adults with autism.
If you are interested in autism in adults, maybe because you or someone you care about may be an autist, a little research shows that the majority of information is around autism in children, parenting and autism, autism in school, etc. This portrayal further perpetuates the idea that autism impacts kids.
“But I Wasn’t Diagnosed As A Child, So I Don’t Have It, Right?”
Right, unless you do have it and just haven’t been diagnosed yet, then you have it.
There is no requirement in the DSM V that you have to be diagnosed with autism as a child. You can absolutely escape diagnosis as a child, never be diagnosed even and still have autism. A diagnosis does not cause autism nor does a lack of one prevent it or mean it’s not present. Stated another way, diagnosis is not a prerequisite of autism. A diagnosis is merely a tool to assist you in understanding who you are, how you are wired, why you experience the world the way you do, and hopefully provide insight into how you can live more fully in a neurotypical world.
In fact, adults born before 1980 were most likely missed and have probably lived their entire lives wondering why life is so darn hard or maybe why they don’t seem to fit in like everyone else. These adults grew up at time when autism was on the radar of, well, no one. Not doctors, not teachers, not parents. No one.
If you are wondering whether you have autism, you can check out my post, “Could I Have Autism? Is That Even Possible?” to learn more.
And What about Those Who Claim To Have Outgrown It?
Is that even possible? Certainly people can develop skills and change behavior patterns as they mature and get older. Certainly they may look as though they are “healed.” If what these folks had, however, was truly autism they may have learned to function at a very high level (high functioning autists can be outstanding at blending in) or they may have learned to overcome the visible symptoms, but I am unaware of any studies or scientific proof that you can have autism and outgrow it. If you are an autist as a child, you will be an autist as an adult.
So What Are The Symptoms of Autism in Adults?
The symptoms of autism in adults are the same as the symptoms of autism in children. Autism is defined by the DSM V. It lays out those characteristics required for a determination of autism. It makes no effort to distinguish between autism in adults and children. The signs and symptoms may lesson over time as you get older and learn coping skills. They may get worse as sensitivities increase with age. Hard to tell which direction these symptoms will go.
How Does the World See Adult Autism?
The amount and quality of information and services available to individuals goes down as they get older. So if you are seeking information and not finding it, know you are not alone and you are not missing something. It is probably, and unfortunately, not there or even worse, it’s negative.
Though there are websites claiming that support and services exist for adults with autism, that support is fairly limited and most likely does not target high functioning autists.
Wow, That Is What You Think of Me?
When I began to realize I may be an autist, I did a little research. That research turned up a pool of incredibly negative, to-the-point-of-making-me-feel-like-the-world-thought-I-was-just-an-idiot, information. I wouldn’t be able to hold a job, I would need adult supervision in relationships and anyone who chose to be my partner would have to be willing to “tolerate my quirks” and “help” me, and of course, I would be a burden on society. Nice. Couldn’t wait to get that diagnosis. Even worse than all that was that article after article noted that the reason I would struggle and fail over and over again was that I was unable to understand what I was doing wrong and therefore, unable to fix it.
Heaven help us all. Who came up with the idea to share such horrible information???
That is the picture of adult autism I have seen. Yes, I have spoken with individuals who give lip service to the idea that autists can be successful and are out there in droves doing just that, but they would then share with me something heartbreaking like “Maybe you shouldn’t tell anyone you have autism. No one will know if you don’t tell anyone, and it will just make your life easier.”
Whoosh. No words for that.
That Is What You Tell People About Me???
These messages to autists are then combined with the dissemination of statistics like those claiming that 75 to 90% of autists are unemployed and that those who are employed are underemployed, because again, we just can’t quite function. Not sure how these statistics, which I would directly challenge as applying to diagnosed autists rather than estimating the number of undiagnosed higher functioning (working) autists, are helpful as they color the opinions of employers and turn them away from hiring perfectly capable competent autists. Unless you want a repetitive, mundane job, because the media is all over portraying adults with autism as not only qualified for those, but as desperately seeking them.
Who I Really Am
What really isn’t out there is information on all the things autists do and do successfully. They hold jobs, they get married, and they have kids. They compensate in creative, innovative, and mind-blowing ways that I would challenge any neurotypical person to come up with. They hide in plain sight, a matter of necessity, after all of the “help” they receive from the world. The world can’t measure their successes, because it refuses to see them. If autists, of whom we think so little, can be successful at the same things as neuortypical people, then the world can’t label them “disordered” anymore. At least not all of them and well, we don’t like that at all. They would have to be treated like people then, heaven forbid.
Over the course of building Her Autism, I have communicated with so many people who handle not just the normal stuff life throws at folks, but they handle all of the stuff that comes with autism as well and rather than credit them for tackling truly impressive challenges, they are cast aside. Their stories, far from being stories of failure are stories that are nothing short of heroic. The challenges they overcome for themselves and their children would inspire anyone who really wanted to listen.
I believe that adults with autism want what everyone else wants – acceptance. As I point out in my posts, “Autism Awareness, Acceptance or Action: Where Are We Really?” and “What Has to Happen for Autism Acceptance?” we may have a ways to go to get there.
So What Is Life Really Like for This Adult with Autism?
It’s hard. It’s hard for the reasons listed above. It’s hard because of the realities of living with autism in a neurotypical world. It’s hard because well, people are just mean.
But it’s also good, or it can be. Just like for anyone else, there are tons of resources out there for anyone who wants to learn and grow and improve. It is just that most of those resources don’t say “autism” and sometimes you have to be creative in how you apply the suggestions and solutions they propose to yourself as an autist.
(I don’t know what it is like to be an autist who can’t live independently, so I won’t even try to speak to that as I think it would be wrong to do so.)
Like many autists diagnosed as adults, I have the perspective of knowing what is life is like when no one (including yourself) knows you have autism and what it is like once people know. I miss the respect I used to be shown by school personnel, medical and mental health providers, employers, friends, etc., as I am definitely treated differently. I describe it as being sane in an insane asylum.
People feel the need to describe me in terms of my autism. People feel the need to describe things to me slowly (even people who have known me my while life). People treat me like I am incompetent. Suddenly they have gone from treating me like the intelligent competent person that I am to treating me like even though I am intelligent there are things I can’t possibly understand. Where does that come from? Well, do a little research, and you will find articles that explicitly advocate this position.
That said, I put my pants on one leg at a time just like everyone else. I participated in sports in high school (heck, I was the mascot my senior year!), I graduated, went to college and law school, have worked in professional employment, homeschooled my kids graduating three from home, etc. My life looks a lot like everyone else’s. The strategies I use to get where I am going are different, but they get me there.
So what does like look like for adults with autism? It looks like what you make of it given the gifts, talents, and strengths you have been given. What you do with those is up to you just like it is up to everyone else to use theirs.
So with all of what I am sure seems like a lot of negativity in this post, am I glad that I have my diagnosis and would I recommend that you seek one? YES. Without question. Having that piece of information is power. What would I do differently? I would choose carefully with whom I share it. Or since I have really loved all of the people I have met along the way to building Her Autism, maybe I wouldn’t.
For all of those of you adult autists who are out there living every day in a neurotypical world, you are amazing so live like it and don’t let anyone or anything stop you!
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