Top 10 Tips for Newly Diagnosed Autistic Adults
This is from Autism Goggles on Facebook. It probably doesn't apply to autistic people here on PEI but I thought people might find it interesting anyway.
1. Find your people. There are tons of Facebook groups for Autistic adults. In my opinion, you’ll learn more from your neurokin (people who share your neurotype) than anywhere else. You’ll likely experience a sense of community and belonging that you never had before. You’ll also have many ‘Aha!’ moments as you read comments and posts from others. May I be the first to say welcome!
2. Get hold of some of the must-have books to help you better understand yourself and your community. I recommend ‘Spectrum Women: Walking to the Beat of Autism’ edited by Barb Cook and Dr. Michelle Garnett; ‘I Will Die on This Hill’ by Meghan Ashburn and Jules Edwards; ‘What I Mean When I Say I’m Autistic’ by Annie Kotowicz, and ‘Understanding Autistic Burnout’ by Viv Dawes. There are dozens more excellent books, and your Autistic community can make recommendations for you.
3. It’s okay to tread lightly when it comes to disclosing your diagnosis. Disclose only what you want and those you trust. That goes for family, friends, and the workplace. It is not uncommon for any of those groups of people to say, ‘I don’t see the autism,’ or to dismiss what you’ve shared entirely. When this happens, we might feel compelled to list the things in life that cause us difficulty. Try to avoid the temptation to do this, and simply say something like, ‘Autism is how I learn, interact with others, and experience the sensory world.” I cannot think of circumstances where non-Autistics would respond to a statement by listing all the things that are hard for them or cause them great difficulty. We shouldn’t need to do it either.
4. Be patient after getting your Autistic identity confirmed. There are few formal supports for Autistic adults, but as you learn what you need to feel comfortable and how to ask for those things, your situation can begin to improve. If you are approaching a social or business-related situation that has you feeling anxious, ask your neurokin for advice on how to respond.
5. One of the best ways to improve the quality of your life is to build one that is strength-based. If you are working in a fast-food drive-through, that is a high-stress social environment. If you love it—great. If you don’t, consider looking for something better matched to your preferences and needs. Could you be a cook in the backroom? A cleaner? Do you need to get out of fast food? Maybe you’re a professional, but you’re struggling with the business management aspects of your work. Could you hire someone to do your invoicing and pay your bills? Maybe a parent, friend, or sibling would help you if you are just building your client base.
6. Consider dating or hanging out with other Autistic people. Studies have shown that Autistics partnered with other Autistics report being happier than those who are with non-Autistics. It makes a lot of sense, right? You don’t have to mask when you re with an Autistic partner.
7. Being Autistic is like being a visitor from a different culture. We are expected to understand the social expectations of the culture we are visiting, and if we make a social faux pas, we can feel the icy stares. If this doesn’t bother you, that’s wonderful. If it does, find someone you trust who is willing to ‘translate’ social expectations for you. Ideally, we do not want to have to change everything about ourselves to be accepted by non-Autistics. Many Autistic people find it helpful to learn ahead of time what is expected in a situation, and what will be expected of us. With this information, you can decide if you want to attend/participate, or simply pass.
8. Remember you are the very same person you were before you received your diagnosis. Knowing you are Autistic can give you direction and ideas when it comes to understanding your life and giving context to major events you have experienced. There can be a palpable sense of validation in knowing there has been a reason some things that came so easily to your peers were so challenging for you, yet you excelled in many areas where they struggled. It can be helpful to know you are Autistic if you are raising an Autistic child because your intuitions regarding the kind of help the child needs are often correct. You have walked the path before your child.
9. Keep in mind that a formal diagnosis can help you get the support you need if you are in post-secondary. If you’ve always struggled to complete exams on time, you may be relieved to know that time-and-a-half or double time can relieve that stress, as can bathroom breaks, snack breaks, clarification of exam questions, and exam schedules that limit the number of exams to one per day. These and countless other accommodations can allow you to show what you know by creating a level playing field—giving you the support you need to be able to demonstrate your knowledge.
10. Autism is NOT a mental illness, but on the path to diagnosis, many Autistics have been diagnosed with anxiety, and/or depression or other mental health issues. One of the reasons that levels of anxiety and depressional are so high in our community is that the speed and volume of expectations, along with everyday social and sensory demands are overwhelming. There is also the experience of feeling out of sync with peers, where many of us have felt isolated, lonely, and rejected by non-Autistics. It is not surprising that up to 80% of children and adults feel “mildly anxious for much of their day and for most of their lives.” Please see previous post: Autism and Anxiety Disorders
"If you have struggled with anxiety and/or depression during your life, you can look for a therapist who is specialized in working with Autistic people. As a neurotype, we benefit from different approaches to therapy, and it can be critical for successful help that the therapist has autism expertise."