Most likely you’re reading this because we’re in a facebook group together and the subject came up and, instead of retyping stuff I’ve written before, I just linked you here. Or maybe you’ve been reading an online article about traits of autistic women and saw yourself in them and started searching for more information. Or maybe neither of those; that’s okay, too. But I became the go-to person to tag in some of the facebook groups I’m in whenever the subject of autism comes up, so for efficiency’s sake I need to put this all in one place. Hopefully it will be of some help to someone. Please know that I am not an expert; at the time of writing this I have been immersed in the world of autism for not quite two years. I have three kids on the spectrum and I myself may be but am not officially identified/diagnosed. My main sources of information is our family life, the writings and advice of adult autistics, and various books and blogs that I may or may not agree with. With that said….
So, you think you might be autistic; cool! For some people that can explain a missing piece of their life that they’ve never been able to fully explain. For others it can be terrifying. First things first, take the Aspie Quiz online.
No, really, you should take it. It’s not some random Buzzfeed quiz that tells you what Hogwarts house you should be in based on your choice of pizza. (Which was wrong, by the way, I am a Ravenclaw, not a Gryffindor, Buzzfeed.) This free online assessment is the exact same survey that is used in offices around the world (or at least, around the USA and probably most other English speaking countries, too.) Results of this test are considered accurate by the online autistic community that I’m in, and it’s the automatic recommendation for a person who is wondering if they’re on the spectrum. So go ahead and take it. I actually had to take it with help from my husband of 12 years because I was horribly indecisive on the degree of things, and having only three options made me very stressed and indecisive. Also, taking it with input from my husband made me realize how very different I am from neurotypical. I would reply to a question, “well of course, doesn’t everyone?” and he would look at me strangely and say, “no. Most people don’t [insert whatever it was here.]”
So, you’ve taken it and you have results. Now what? Once you’ve processed any emotional reaction you may have to the results, one thing to consider is: is this information enough for you, or do you want formal testing? If you desire a more official identification/diagnosis, you’ll need to find someone who is qualified to do that. I’ll warn you, from what I can tell based on what other people have said about it, there aren’t that many people out there. A big part of that is because while autism is recognized as being a spectrum that people of all ages can be on, it’s still primarily child focused. Another part of this is there is a lot of misconceptions and misinformation about adult and especially women autistics that frustratingly persists even in the professional field that should know better.
If this is enough information for you for the time being, and the quiz did indicate that you could be neurodiverse, I suggest trying it on and see how it fits. Learn about what autism is and more especially what it is not, and see if it applies/explains. This is what I did, and after a few weeks I noticed that a mind-shift had occurred. My life made more sense, my interactions with other people became less stressful, and therapy with my husband became more effective. I realized that what I have been expecting from other people has been so far from what is neurotypical that I was very off from reality. It also made me more comfortable with myself. I don’t know if I will pursue an official identification/diagnosis, but right now I am happy with what I think about myself.
The second thing I recommend to do is something I did before I took the RDOS (aka the Aspie Quiz,) and that is to get plugged in with the autistic community online. Not the Autism community, which is mainly parents of autistic children, but the Autistic community, the adults on the spectrum who have come together in various online conclaves. My regular recommendation is Autistic Allies on facebook. The group is a neuro-diversity positive, information disseminating group. Once you’re in it you can join the support/ask questions group, the relationship questions group, and/or the chat group. There are all sorts, both on the spectrum and not, as well as individuals who only talk with devices/text. I have found it to be a wonderful source of understanding and others who I have pointed to the group after their self discovery have experienced the same thing. Self diagnosis is accepted in the group.
Speaking of which, what exactly is neurodiversity? You’ll find that there are new terms to learn when entering the world of autism. ASD, SPD, ESA, ABA, stim, persevering, etc. I love this image from Erin Human (used with permission. Check out her site!)
That’s the idea of neurodiversity in a nutshell; that differences are natural and good. For less nutshell and more specifics, NEUROCOSMOPOLITANISM’s definition of terms is the gold standard. Neurodivergent or ND is a person who has an exceptionality like ASD, ADD, etc. Neurotypical or NT would be a person who is considered “normal.”
Before you jump into the online community, I should probably mention a couple of things.
- No cure talk. Autistic people are not and do not have a disease, so the idea of a “cure” is a non-starter. Also, vaccines don’t “cause” autism.
- ABA is considered by the majority of the adult autistic community to be akin to dog training at best and child abuse at worse. Many adult autistics are dealing with PTSD as a result of ABA as children.
- Dr. Temple Grandin is probably the most famous (to neurotypicals) adult autistic. In the Autistic community she is a controversial figure for some ableist and eugenic leaning comments, as well as aligning with not respectful to autistics charities. Bringing us to:
- Autism Speaks is hated by every autistic adult I have met so far. Also known online as Autism $peaks or A$ for their taking millions of dollars looking for a “cure” or a genetic test so autistic people won’t be born and hardly any at all helping actual autistic people and families.
- Functioning labels like “high functioning autism” and “low functioning” are considered divisive and insulting by many adult autistics.
A really great vlog primer on what it means to be autistic and the new things associated with it is Amythest Schaber’s Ask an Autistic series on youtube. For other sources more official and informed than myself, Neurodivergent Rebel is compiling a list.
Today your whole world view and how you have defined your life may or may not have changed. For some, that might necessitate a break to process. For others it may mean carrying on as usual. Whichever you are, I hope you have someone you can talk to about this; be it a close family member or friend, or a complete stranger online. I have found that autistic people can be some of the most accepting people I have ever “met.” Perhaps the most convincing thing for myself was how comfortable I am around neurodivergent people. I hope you find this to be true for you, too. Welcome to the family.
Edited later to add: I have taken the steps to get my own official assessment. Before I was assessed I wanted to make sure the person assessing me was a good fit. I made a list of questions that I blogged about here if you’re interested in doing the same thing.