Autism and grief: "I have a schedule in my head – when Dad died, I lost that"
For World Autism Acceptance Week, Simeon Jackman-Smith tells us how his autism affected his grief when his dad, David, died in April 2022.
Grief and autism have at least one thing in common: it's different for everyone. With grief, some people might cry after a bereavement, and others not at all. With autism, some people might need daily support, while others might need less.
For Simeon Jackman-Smith, a 23-year-old actor and bartender from London who was diagnosed with autism aged three, it's difficult for him to judge how his autism affected his grief when his dad, David, died. "This has just been my whole life. I don't know how I'd be if I didn't have autism. I could've been a different person".
The effect of his grief, however, was clear. "I know how I dealt with my grief: I cried. And I just tried to act in a way where I kept myself going".
"I talked to Dad about all my problems"
David also had autism, which was diagnosed at the same time as Simeon's. "I talked to Dad about all my problems... so he was quite good with telling me how to deal with things. He helped me understand certain things about life... about why people do this and that".
In April 2022, Simeon's mum told him his dad had terminal lung cancer. David died less than two weeks later. "First I was shocked, then it was sadness," says Simeon. "Then I was just angry".
Does autism affect grief?
After his dad died, the pattern of Simeon's life changed – something which he thinks was influenced by his autism. "With autism, people have a set schedule in their head. There's a schedule of what they do. But when Dad passed, it was just a bit like all over the place. I didn't really understand it".
Simeon's mum suggested he get in touch with Marie Curie's Bereavement Support Service. "I think that's why I called," says Simeon. "To help me understand stuff a bit better". Volunteer Ben, trained in bereavement support like all Marie Curie volunteers, was paired with Simeon.
Over their six sessions together, Simeon's autism was "only mentioned in passing," says Ben. "It was something we were both aware of, but our conversation focused much more on how he was feeling about the loss of his dad and how his bereavement was impacting him in his relationships."
How to support people with autism through grief
Ben's experience supporting other neurodivergent young people gave him confidence speaking with Simeon. But he didn't use "specific techniques, or language, or have any specific insight that 'allowed' me to speak with Simeon."
As autism affects everyone differently, some people might need support in different ways. For some, avoiding euphemisms can help them understand and process what happened. Saying that someone is 'lost' or 'passed away' might be confusing.
But in Simeon's case, Ben's support focused on Simeon's feelings – not his autism. "It's the listening that counts." It counts, Ben says, because it prepares the person giving the support to "simply meet the neurodiverse person where they are, without expectations that person should act or respond in a predetermined way."
Everyone, whether neurodivergent or neurotypical, feels loss in their own way – and everyone should get be able to get support.
According to Simeon, this means that people without autism should "just be patient with people" who do. Whoever you are and whatever you're feeling, "there's no right or wrong way to deal with grief".
"Grief is never temporary... It's part of me now"
With the one-year anniversary of his dad's death approaching, Simeon knows it'll be an emotional time. But he believes the emotion won't be limited to anniversaries: "Grief is never temporary. It's there. It's a part of me now. I just have to deal with it from there."
At the same time, however, nearly one year on from his dad's death, Simeon is proud of how far he's come. "I think I've changed for the better. That's down to a combination of Marie Curie and my mum. I felt much more able to try and get back to being me. I'm starting to feel stronger."
Whoever you are and whatever you're feeling, if you need to speak to someone, we're here for you. Call the Marie Curie Support Line on 0800 090 2309 to speak to a trained member of our team.
