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Jackie Coursey

Late Diagnosed Autism

Late diagnosed autistic adults often share that they suspected they were autistic many years before they were validated with a medical diagnosis. Many felt confused and alone in social situations as early as elementary school, when parallel play was less of a thing and kids their age were getting more sophisticated in their communication with one another. Some speak of cruel bullying during their school years which sometimes eased up when they headed to college. After spending the younger years often copying the behavior of peers, adult social situations often continue to be nerve wracking and confusing. Clients often say it is as if they never received the "relationship and communication handbook" their peers seemed to have memorized.


While learning that your brain is simply wired differently may be life affirming, a late diagnosis often means you grew up missing years of support and services. Many late-diagnosed people share that they go through a grieving process, thinking about what could have been and how much less overwhelm and burnout might have occurred if they'd been supported.


As an adult, you may discover that services are often not offered to you. It is up to you to advocate for yourself and build a strong support team and community. Depending on where you life, some states in the US have a person-centered planning process in place that offers the opportunity for you to manage your own budget and providers of services you handpick. As an example, in 2021, California opened up a Self Determination Program for autistic adults. You can learn more about this program here.


What are some ways to take care of yourself after diagnosis? For one, meeting with an Autism-Informed therapist. Working through your past pain, trauma, and new diagnosis can be much easier with a mental health professional you trust. If you are unable to find a good match with someone with this background, at least find a trauma-informed counselor. If you would like to work with an neurodivergent therapist, check out these providers. This list includes many autistic therapists.





Making goals around self preservation because of work place and relationship demands can also be helpful. High pressure environments can take their toll, especially without the planning for rest and rejuvenation before and after big events, significant expectations or deadlines. In our coaching sessions, we call this making a sandwich. The bread is the pause before and after. The meat or cheese is the event that takes up your energy.


What else can help? Finding ways to get your needs met. And, noticing the beginning of overwhelm and burnout before it takes over your life.

One way to feel less alone, as you navigate your new diagnosis, might be by discovering others' stories about late diagnosis. Check out a few suggestions:



"My So-Called Disorder - Autism, Exploding Trucks, and the Big Daddy of Rock and Roll," by Peter O'Neiil. Diagnosed at age 65, Peter shares his incredible life story in his book.


Medium.com has many autistic writers. In their 5-minute read, "Shit, I Did It Again. Experiencing ASD as An Adult," Tiffany Elliott discusses navigating both her childhood and adulting before her diagnosis.


Growing your network to include autistic friends can help you feel less alone while coming to terms with your diagnosis. There are many autism support groups, Meet Up groups, and clubs. If you need help creating a support plan, we can help. Contact Sacred Space Coaching for a free consultation.


What is Autism?

Trying to explain autism to others?

Are you trying to define autism for yourself?


Autism is a wide spectrum of neurodevelopment differences that includes unique strengths and challenges. It is a life-long condition. It is not a disease. We believe these differences and strengths are to be encouraged, nurtured, and treasured.


Autistic individuals approach socialization and communication differently than allistic (non-autistic) peers. Autistic clients and friends tell me that they feel like they didn't get society's "rulebook for communication" and that they don't have the energy reserves to maintain allistic communication styles. That is where autistic burnout, masking, and internalized ableism comes in.


Autistic adults and children are often more direct and honest in their communication. You probably don't tend to rely on or understand non-verbals and find small talk uncomfortable at best. You may find that eye contact causes overstimulation, sensory overload, and difficulty concentrating on what another person is saying. You probably appreciate a facts-based, efficient conversation over small talk. Do you find it extra exciting to find another person who is interested in the same hobby and would love the opportunity to talk it for hours?


As a young person, you may have been made to feel embarrassed by stimming or repetitive behaviors. Allistic schoolmates did not understand. It is very grounding to stim. Autistic friends share that they stim when they are joyful and excited. We believe that it is a positive part of your identity, a healthy way of expressing yourself. Research shows that repetitive behaviors reduces sensory overwhelm and can help you deal with stress.


You may find that you have fewer interests than allistic folks. Your hobbies are extremely important to you and you learn all that you can about them.


Functioning in a neurotypical world where differences are not usually appreciated can be difficult. One of the reasons I am a life coach for autistic adults is to bridge the gap and help clients find their strengths and appreciate their uniqueness.


 


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