Having autism means I have been diagnosed, based on deficit criteria used by the medical field, with a medically defined disorder called autism. The diagnosis of autism is housed in the DSM 5 so falls under the domain of psychiatric disorders. When autism was first described, based on behavior deficits, it was thought to be a psychiatric disorder. We now know differently, but the diagnosis of autism remains housed in the DSM 5.
Being autistic means something vastly different. Everyone’s personhood comes to be defined by his way of thinking, being and interacting in this world. I have an autistic style of thinking, being and interacting in the world. Thus, my very personhood is autistic. Just like my personhood is white and female, so is it autistic.
I am autistic and I have autism. Both apply. Both are true. I do not need to choose only one statement as my truth. People need to understand this. It is not a case of choose your side and fight for your cause. This is important. Problems happen because people do not understand the difference these two statements imply.
I have autism. Autism is a disability. Life with autism can be difficult. Because of autism I need certain supports and accommodations. Having autism means I can ask for these supports and accommodations due to the fact that I have a medically defined entity called autism. I appreciate my diagnosis. I appreciate having autism because this medical label allows me a way to talk about and to get the accommodations and supports I need to live my life.
But the medical label of autism does not define my personhood. Problems arise when the diagnostic deficit language of having autism is taken out of the medical realm and used to describe my humanity – the human being I am in this world – a white autistic female. This is who I am.
I have autism. The difficulties that come with my autism can be supported and accommodated.
I am autistic. It is my place of being in this world. The essence of who I am – all my thoughts, actions and interactions are based on who I am as an autistic white woman.
I wish more people understood the differences between having autism and being autistic. At this point in history it is assumed having autism and being autistic are one and the same thing. This sort of understanding by the general public and most professionals who deal with autistic people cause us to be treated as if we are only the sum total of our autism deficits rather than as autistic human beings.
Here are a few illustrations:
If you are autistic and want to learn to paint and can sign yourself up for a painting class this is what you do. However, if your autism posses difficulties meaning you need to ask your broker to sign you up for painting classes you will likely wind up being offered Art Therapy.
If you are autistic and want to learn to play the piano and ask for assistance to find a piano teacher you are offered Music Therapy. If you are neurotypical and want to learn to play the piano nobody will suggest Music Therapy, but instead when you ask about piano lessons you will get referral information about piano teachers.
If you are autistic and want to meet people who have similar interests a Social Skills Group is suggested. If you are neurotypical nobody will think in a million years to give you information about social skills groups, but instead will tell you about things like the Saturday Bird Watch Hikers, the Quilting Class at JoAnn Fabrics and the Open Studio at the Pottery Shop – established groups or classes where participants share one of your interests.
At this point in history, because society views having autism and being autistic as the same thing, autistic people are assumed in need of fixing – as if having autism is the sum total of our existence. The opportunities people extend to us are based on this notion. No matter how old we get we are continually segregated into things like Art Therapy, Music Therapy and Social Skills Groups.
Some days it is down right impossible to get others to see I am more than my autism diagnosis. In reality I am an autistic person wanting to enjoy life and learn new things just like any other person. Sometimes I need support or a particular accommodation to make this a reality – not therapy.
JUDY ENDOW, MSW
Judy is an autistic author and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.
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We’re still stuck in the deficit model of judging people. Until we celebrate the strengths of all (not just neurotypicals) we are limiting ourselves. Judy thank you for sharing and reminding us to look for all parts of a person, not just a diagnosis or a difference.
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This article makes me think about Boston Ballet where my 5 year old daughter takes ballet classes. In her class she and one other girl are on the autism spectrum. They love their classes and are always happy to go. I recently learned that Boston Ballet has classes for kids that are developmentally disabled and it made me wonder if at some point my daughter will be nudged to take those classes instead. But it does make me wonder if the special classes are an attempt to separate kids from each other.
I loved your post and I see your distinction and agree with it. Yet, i am a parent of an autistic child. I want him to have some therapies. I am not trying to fix him. This is what I tell him: when you go to therapy you are working on the hard stuff in a place that is safe. Is this wrong? He only goes for about 6 hours a month. All of the other things we do are out in the community together as a family. He has not really expressed an interest in friends yet. So, I don’t push that. But, I keep thinking, if he can practice learning how to deal with other people besides just us, in a safe environment….this can’t be bad.
As usual, I learn something every time I read one of your articles. I love hearing your perspective.Thank you for sharing this. I completely agree with what you have written.Although others (as noted below in your comments) may not have experienced this, those students with whom I have worked HAVE. They don’t have the skills to simply walk into an art shop and sign up for ceramics classes. They physically, socially and verbally need support in all these areas. I watch parents go 2 routes in this area of need. Some end up signing up their child for art therapy, because that is how they are directed once “good hearted people” see their child. Other parents see a skill (such as ceramics and creativity) in their child (adult child by the way) and do what it takes to get their child into a art-based ceramic class in the community where the child hones the skill of actual ceramics. While both individuals may enjoy their experiences, to me and the student their experiences are night and day.
Judy, thank you so much for your article. I can totally relate. Especially when you say “autistic people are assumed in need of fixing.” I get frustrated when people always talk about us as having something WRONG with us. In my website, I say that there is nothing WRONG with an autistic person–but something DIFFERENT about them. Thank you for writing this!
My website is:
I never put it together this way. Thanks. It gives me the knowledge to understand me in relationship to the world better. Some days it is an advantage to pass as normal and some days it is not. We all just want to be ourselves and that includes autism for us. It does not include being put into someone’s box. What interests me is these artist endeavors used for examples would put anyone into a very accepting environment. Not everyone treats us like we are weirdos. Some people just find us interesting.
Damn good write-up! However, who keeps trying to fix you?
Amazing and insightful post! My daughter is 14 and one of her doctors once told us the very same thing. I never forgot it. He said if you tell people you are autistic, that’s all they will see. If you tell them you HAVE autism, they will assume that it is only part of you.
Thank you Judy for explaining and clarifying this. I’ve seen a lot of posts on this subject lately and this one helped me to understand the difference.
With all due respect, your excellent and thought through post overlooks the fact that many (maybe even most) of us receive “normal” answers in response to our queries, most of the time.
If I walk into a music store, and ask where to learn the piano, I will get referred to music teachers. Music Therapists will not be part of the conversation.
My being autistic or not will have no bearing on my conversation with the guy in the music store. It’s hard for me to believe your life would be different in this regard, when you interact with most people.
The place I’d expect it to be as you describe is when you talk to present or former therapists. If I sought out my therapist, and said “I want to meet more people” his normal response might well be “What about the ASD social group this Sunday?” But if I asked most other people I know the response would be “let’s go out,” or “come to my party” or some other more typical answer.
The answers you cite as examples – in my experience – come from people whose relationship to us is providing that kind of help or guidance. Those people would probably say giving such advice is their job, and i would agree.
What do you think about that?
Not to often have I had an opportunity to click on a link regarding Autism Spectrum Disorder to grab my total attention all the way through. I agree 100% with your statements and clear division of autism as a diagnosis and “way of life” if you will. Thank you for sharing this :) I will be passing it along to all my Facebook friends and Facebook group: I Support Autism Awareness. Jen Donatella
Judy, You continue to expand my thinking. Thank you for sharing such an important post.
Having a friend that can articulate as well as you do adds so much understanding of how my child feels because he can’t tell me! I am so thankful!
That was very thoughtful and well expressed. And changed my thinking. I was taught in my support group to use person first language of saying “He has autism” to respect the humanity first. And to stay away from saying he is autistic because it is like saying he is MS or any other disorder.
Your words are food for me Judy.
Another must read piece by Judy Endow!
A terrific and important post by Judy Endow
You have opened my eyes, and my thinking, in ways they have never been opened before. You are a gem!