Helping adults on the spectrum with grief

Alex LaMorie serves on the advisory board for autismandgrief.org, a new website for adults with autism who are grieving, their families, and professionals in supportive roles. The site was underwritten by the NLM Family Foundation and developed by Hospice Foundation of America, self advocates, and autism and grief experts. 

Alex is 23 years old and is an adult with autism. 

Learn more about Alex and his autism journey in this Q&A: 

What’s something you’re passionate about? 

One thing I'm very passionate about is writing. I like to write my own stories. I take ideas from other mediums, and I mold them into my own visions. I like to write action things and horror stories. I take a lot of inspiration from work I've already seen, like Iron Man and Captain America. Sometimes I'll take aspects of the character and make them into a new character. 

Describe your journey with autism. When were you diagnosed with autism? What's been your biggest struggle with autism? What’s your favorite thing about your autism? 

I believe I was diagnosed properly with autism at the age of 13. It was implied that I had autism when I was a child, but an official diagnosis was not reached until the age of 13. In middle school I had a severe mental health crisis when my autism manifested, and I had to go to the hospital once and then again when I sort of relapsed. Then doctors and everyone else finally figured out what was happening, what I needed, the treatment, all of that. Those hospital stays are mostly a blur now, but in hindsight, they were extremely helpful. Those visits helped make me who I am today. 

I guess the biggest struggle for me, and there's a lot of them, but the biggest one is sort of still accepting my autism. I blame it for certain things that go wrong in my life. Autism makes you better at some things, both good in good ways and bad ways. You know, autistic people have, for lack of a better term, enhanced senses. So, I hear things, see things, feel things that other people don't, both in a good way and a bad way. 

My favorite thing about being autistic is being labeled that way(sarcastic laughing), but seriously I feel like I've met a fair amount of people I care about, especially my friends with autism through my autism. So that's my favorite thing, I guess. Autism makes me unique, and it's helped me meet a lot of the people I care about. 

What was your role in the development of the website autismandgrief.org? 

My primary role was being an advisor. I was on the advisory board along with other people, including other adults with autism, autism experts, and grief experts. It was enlightening because there were so many different views about autism and grief. As the website was being developed, I provided hands-on expertise based on my own experiences with grief. I attended a lot of Zoom meetings and was interviewed for some videos that are on the website. I got to speak from my heart, so what I said was more sincere and honest. I got to explain my grief and help people see that each grief experience is unique. Grief is not a one size fits all thing. I also found things on the website that were wrong, things that were good, wording that needed to be tweaked. I also helped with two animated videos on the website by reviewing and commenting on the work from Exceptional Minds, the studio we worked with. After the website was launched, I presented at the Association for Death Education and Counseling Conference(ADEC)this spring as part of a panel. The presentation at ADEC was phenomenal. My experience there was amazing, and I think it was amazing for the people that were there in the audience. Their questions were engaging. I just felt confident and just so honored to be a part of it. And the people there were polite, understanding, they were quiet. They weren't constantly interrupting. We will continue to do presentations around the country about the website. 

Why was the project important to you? 

The project was important to me because I wanted to help to get this resource out to people like me and to caregivers and professionals. I was lucky enough to grow up in a sort of a community that understood grief, with a mother, stepfather and friends who understood grief and grief counseling. My mother happens to be a well-known grief expert, and I've had multiple different deaths in my life at crucial moments of my life. My late father died when I was six. I was just a child. I barely remember him. I had my grandma, my grandpa, my childhood babysitter, and family dog all die within the space of a year. And that was at the height of my teenage years. I had an old family friend die during the midst of Covid. And so, I've had a lot of death happen within a lot of major points in my life. My journey with grief has been, what's the term? Profound. It's been complicated and difficult. My mom taught me how to get through the death, how to cope with the aftermath and to sort of hold them dear to our hearts. But there's a lot of people like me out there who don’t have the support I’ve had and may need help with resources for their grief and their grieving experience. And so, my motivation for this was to help people like me get the help they need, get the resources they need. Grief is a very individual thing, and everyone grieves differently, but there are some special considerations for people with autism. For example, with funerals. One of the general characteristics that all autistic individuals share is how huge social situations can be extremely overwhelming. And so, with the size and scope of my own family, a lot of the funerals were filled with a lot of people. And so sometimes I could only go for the ceremonies for a couple of hours at a time before getting extremely overwhelmed and needing to leave or go to an isolated area for an hour or two. 

How do you think autismandgrief.org benefits adults on the spectrum?

Well, autismandgrief.org is a one-of-a-kind source. It's the first of its kind too. It gives people information, provides a foundation for them to step up on and find answers about their own grief. Information is available in different ways for everyone on the spectrum. For example, we have animations. I remember the advisory board had first shown them before they debuted on the website. I'm like, “This is fantastic. And whoever made these is just wow”. And you know, it was a company that employs people with autism, and they developed the animation part. We developed the content, the words, but they developed the animation. It showed our dedication to, you know, adults with autism by employing adults with autism into our work. 

I think it shows that we're including everybody or drawing upon individuals with autism from all over. 

What is the biggest piece of advice you would like to give to autism caregivers about communicating news of a death? 

I can't really give a general piece of advice on that because there's far too many different scenarios that you could be telling someone about, and a lot depends on whether it’s a sudden death or something prolonged, and who the person was to the person with autism.  There are far too many variables for me to provide a single answer -- the person's own emotions, how they might react, for example. I guess the biggest piece of advice I can give is to find out how they communicate. Because individuals with autism always have a sort of unique way of communicating. They don't communicate the same way. And so, find out how they communicate. I guess I can really say is just do it gently. Don't just barrel into it and just say, “Oh, they’re dead.” Sort of, sort of gently let them know, or if they are very logical, very logically let them know as matter of fact, just but don't drag it out. Be clear and direct. Somebody with autism might not react in the same way that other people do to the news. Some people draw inward. They don't show an outward reaction to the loss. You should understand that they may not necessarily have an outward reaction. They may look fine, but on the inside they’re not. And sort of help them through that, not by pushing them for an outward reaction, but just sort of understand that and support them in the best way you can. For example, I cope by taking my feelings and thoughts and emotions on a matter, and I mold them into a character in my head and then use that character in imaginary scenarios to help process and move through those feelings. But that's unique to me. That's something I do. My mom supports me by talking to me about my stories and helping me process my grief. So, find out how the person you’re caregiving for copes, how they communicate and work with them like that, work with them through that and help them find the support they need and always let them know there is hope. 

You can find more resources on grief here.