My name is Jeremy Tolmie and I am a person with autism. It was just before my 18th birthday that I went for an autism assessment and received a diagnosis.
I was adopted. So, it wasn’t until my biological grandmother reached out to my parents and told them that it might be good to see a psychologist because of our family medical history.
So, in 1999, my parents and I reached out to the Autism Society of BC in Nanaimo. They helped me with a Person with Disabilities (PWD) application and directed me to other supports. It was helpful to learn how to navigate the healthcare system.
Mixed Diagnosis and Medication
Receiving a diagnosis at seventeen might seem ‘late’ for some people, but that was the time in my life when it could really help me. Before the autism spectrum diagnosis, I was already on medication for OCD. I saw a psychologist who gave me a mixed diagnosis (anxiety and ODC) and sent me home with some medications. These medications did not work for me. They made my brain foggy, I was really impulsive, I felt weird and not like myself.
Medication can be really hard because doctors can get things wrong, and everyone’s body reacts differently. You should be able to ask, “What is the medication for?” I think if I were to be able to give people advice, it would be to trust your own feelings. It is okay to tell a doctor or parent, “I know my body and how it feels, and something is off.”
Supports and Housing
I have faced many barriers and unfair treatment in my life. In school, I never received any support, any therapy. I was never given an Educational Assistant (EA), even after the diagnosis. When I went to university, I struggled to access supports; Occasionally, I was given more time on exams.
When I was 31, I thought it was time to try to move out from living with my parents. I didn’t know what it would be like. I talked with Community Living BC (CLBC) and had a psychological evaluation to see if I qualified for housing supports. After the exam, I waited over 6 months for someone to get back to me and let me know that I would be added to the Nanaimo Association for Community Living Home Share List. I feel lucky because when I first did that, I was given a contact person – now, in many programs, I am just a case number. Every time I try to reach out, I have to connect with a different person, which can be challenging.
After a long 3 year wait, a two bedroom apartment became available for me to move into, and I would be able to live alongside someone else. This was a hard transition for me, as I was very comfortable where I was. My roommate didn’t last long and, after a year, I needed to move to live with someone else.
I started to live alongside a new roommate, Dave, and it took almost 4 years for me to feel comfortable with him. Since he was renting an apartment, we needed to move a number of times. Each time, I had the opportunity to go back for re-placement or continue to live with someone I began to know. So, I kept living with the same person and eventually we moved to a house. I talk about this a lot in my most recent book, so if you want to know more details about the experience, please consider buying a copy.
Most recently, I have transitioned to semi-independent living. I still receive 17 hours a week of support from NACL where people a consistent support team come in to help me with some cleaning, meal prep and cooking, and fitness and workouts. It is really nice to have the connection.
For me, really the place that I feel the most safe is my own apartment. There are not too many community spaces where I feel comfortable. I mask when I am out in the community, at the store. I mask when I go to work. I like to prepare before I go out.
Autistic Meltdown is different for each person. For me, I quickly become nonverbal. I fixate and stare at the ground. I internalize and have a hard time communicating with others. I fixate on any dirt and wonder why it’s not clean. I shake and rock. I cannot eat. I cannot sleep. And this can last for hours.
I am lucky because I can often sense an autistic meltdown or shutdown coming. Now, whether I have time or ability to react to it in time is a different question.
To cope, or de-escalate, I can take my anti-anxiety medication, focus on my deep breathing and mindfulness, or try to tell myself to identify 5 different things in the room around me (that can help me not narrow my focus to the floor and grounds me in the space that I am in). A big thing for me is music. I find that listening to emotional music that I can relate to is really grounding. For me, that is normally Simple Plan.
This latest memoir is by far my best and more powerful. At first, I was trying to talk about the misconceptions of people on the autism spectrum, but this book is much more personal. It is about real events and my experiences. I hope that my sharing can help others who are struggling to navigate complex systems of supports and inspire people to live normal autistic lives. We need to share more stories that are honest but also hopeful.
There is always hope. Never give up. The current medical and support systems are challenging, and waitlists are long. Look for the right people to be around you. Never give up on yourself. I hope that my openly sharing my experiences it can give others hope.
You can find Jeremy’s memoir Kicking ASSpergers One Meltdown at a Time available for purchase here.