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autism

caring for an adult son with autism

nathan and michael have rearranged their lives to keep their son alive amid lack of social supports, insufficient mental health care, policing issues and financial strain.

by maja begovic

published feb 08, 2023

last updated feb 01, 2024

12 minute read

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12 minute read

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finding your community is important to self-care

"i feel guilty for keeping him alive knowing he continues to suffer, but i do what every parent would do — i jump in to save him," said michael about his autistic adult son. supplied

*content warning: this story contains references to suicide and suicidal ideation.

according to the centre for mental health and addiction, 75 per cent of children with mood or mental disorders don’t have access to the care they need. that struggle becomes even more complicated for families who have a child with a mental illness and an intellectual or a developmental disability. in ontario, a $1.5 billion shortfall in funding is to blame for this — a gap that may perpetuate the lifetime nature of mental illness and lead to a lifelong disability.

nathan and michael are parents to an autistic adult son who has a long list of mental health diagnoses. in an interview with healthing, they opened up about their son’s first suicide attempt at age 10, the financial impact of their caregiving experience, the toll it’s taken on their own mental health and the challenges they’ve encountered in a system that is failing so many.

this interview has been edited for length and clarity.

what led to your son’s mental health diagnosis?

nathan: we adopted our son when he was seven years old, and we knew of some of his complex needs. his foster family started seeing signs of issues with mental health when he was three, but he didn’t get his autism diagnosis until he was 18. up until that point, his clinical pediatrician was adamant that he didn’t have autism because he had a sense of humour.

michael: we both worked in group homes, but part of my background was in bereavement and suicide training. i started seeing signs, behaviours, and the way our son would talk about certain things that gave me reason to be concerned. we started sharing our concerns with the team that was already involved — his pediatrician and social worker — and we were told that we were reading too much into it and that kids that age can’t be suicidal, that they don’t really have a concept of reality. our son already had an intellectual disability diagnosed at that time and we were told that kids with an intellectual or a developmental disability don’t die by suicide, which is another myth. i proceeded to take more courses to try to keep him safe. right before his 11^th birthday, he tried to hang himself, and a couple of weeks later, there was another attempt where he tried to suffocate himself.

as a parent, how do you process such a traumatic experience?

michael: i personally felt angry that no one listened, and at the same time, i felt validated, that i knew my child well enough to see the behaviours that the professionals didn’t see. now that he is an adult, he is still being (and we continue to be) dismissed and not supported. they don’t understand that he lacks the skills to manage strong emotions, and he is impulsive and sees the hospital as a safe place. they don’t recognize that this is a reflection of how his brain processes and is his way of coping.

nathan: since that first suicide attempt, we’ve had every experience — including going for a walk with our dog and arriving home to him holding a large knife pressed to his chest and the hospital not admitting him. we’ve showed up to the hospital emergency department after his suicidality where they refused to even see him. another time we’ve also asked the police to intervene, and they apprehended him but didn’t search him (he had a knife) and released him, but not to our care. we ended up finding him in the woods with his wrists superficially cut.

who have you turned to for support over the years?

michael: we’ve had social workers to support us, which was very beneficial, but unfortunately, they moved people around, and we lost that. one of the biggest supports we had was an educational liaison who helped keep our son in school.

nathan: unfortunately, we’ve become isolated and distanced from most of our old family and friends because they don’t understand our son and his needs, so we’ve had to create our own chosen community that supports us.

now that your son is an adult, how do you support him?

nathan: the challenge with his mental health is that it’s so cyclical. he may be in a pattern where he is up all night and sleeps during the day and that may correspond with him being suicidal at night or impulsive. you put all that together, and it means we don’t sleep at night because something might happen. he sometimes works, but on his non-workdays, when he is sleeping through the day, we prepare meals for him, make sure to give him his medication four times a day, we clean his apartment, help him with personal hygiene, navigate and advocate to find supports, try to manage his invasive thoughts compulsive spending, wandering or being taken advantage of.

michael: there is an expression that i feel will resonate with many parents in a similar situation and that is that, “i’m tired of being the hero and the villain in the same story.” our son will turn to us when he needs support, is in a bad spot or is stressed out as we are the only people he can count on. but when something goes wrong or he becomes frustrated by his limitations and barriers, we are also the same people he gets angry at, which puts us on the receiving end of emotional abuse and gaslighting. when our son was younger, his anger would lead to physical violence.

how do you get through those tough days?

nathan: my mental health gets worse, and i have become suicidal myself at times because i need to escape this reality and i know i have to do this the rest of my life — or for the rest of his. we are in constant trauma, we’re fighting to keep our son alive and give him the quality of life that makes him want to be alive. we’re also fighting systems that make things worse or don’t help at all. but at least we have each other.

michael: sometimes, neither of us have the bandwidth to deal with whatever is happening, and we’ve called on other people for help. one thing we’re good at is that if nathan is having a bad mental health day, but my day is worse and i just can’t do it, he can compartmentalize long enough to get our son through a challenge until i can step in.

what advice do you have for parents whose child may be struggling with mental health?

michael: you will fight, you will argue, and you will disagree, but understand that you’re not fighting against each other. you’re actually fighting for the same thing: what’s best for your child. you just don’t agree on what that is in the moment. we’ve survived 17 years with our son’s complexities, and statistically, we should not have survived as a couple.

throughout their caregiving experience, michael and nathan say that finding your community is critical to self-care. getty

how has caregiving impacted you financially?

michael: we were living in a city condo with a mortgage paid off, but we moved to a small community of 800 people so that we can afford a house with a basement apartment for our son. in the city, the police were not supportive of him — in fact, they penalized and criminalized him. the hospital was not helpful either. we couldn’t house our son anywhere else. he has complex needs and we couldn’t find a placement for him. we’re so far out now, it’s nearly tripled our monthly expenses, but we didn’t have another choice. after an exhaustive search, we’ve also invested thousands of dollars on private psychotherapy that didn’t work.

nathan: i have completed my phd, but that kind of career is gone because of my own mental stress and his needs. i wouldn’t have the ability to keep up with the demands of a full-time job because i’m already in trauma mode, so i work part-time and that gives me the flexibility our family needs. in addition to lost income, our son is a compulsive spender, so we also have to be able to cushion that so he can live.

how difficult is it to find a placement?

nathan: we’ve been on a wait-list for group homes and supportive housing for about seven years, and around the time when the pandemic started, we learned that it would take the system 160 years to clear the backlog and place all the individuals on the wait-list. the move to a smaller community has given our son his own space, and while the hospital here isn’t always helpful, the police are better here, they don’t bully our son, they respond to him, and most importantly, they interact with us.

that said, we recognize that we have a lot of financial, experiential, and educational experience that other people just don’t have access to, but the system is still failing us. we grew up in white, middle-class privilege, and we thought the system worked for everybody, but having our son has removed that myth. in fact, the system doesn’t work for many. being gay, i have experienced barriers so i had some idea, but these are overshadowed by the severity of mistreatment our son and us as caregivers experience.

what would make the caregiving experience less stressful for your family?

michael: i would ask people to step back and pause for a moment. there are the “armchair quarterbacks” who just stand there and tell us everything that they believe we’re doing wrong as parents. it’s bad enough when people aren’t willing to lift a finger to help or try to understand, but to sit there and gawk or mock or judge our son, or intimidate or scare him, he doesn’t need that. we don’t need that.

nathan: there should be increased funding to the ontario disability support program, the passport program, funding for staff and staffed housing — and these staff need intensive training in the complexities of autism, developmental disabilities and mental health. caregivers who are in this situation should also be financially compensated. if we can’t fix the system, we should be paid for the work that we’re doing so that we can live and find the support our son needs and what we need as his caregivers. we need organizations to call us back and be accountable and change their practices. we need more than a crisis line and more than six free mental health sessions. there needs to be ongoing mental health counselling support or therapy services for caregivers. don’t throw meds at me, i need to talk this out with somebody and so does my kid, and so do we as a family and as a couple.

people who don’t have experience with mental health don’t always know what to say or how to help. how do you navigate those relationships?

michael: there are some people you don’t want to lose, that are on your team, that aren’t intentionally against you and want to help, but they also don’t get it or don’t know how to help in a way you need it. i’ve made a personal decision to keep some people in my life because i don’t want to lose everybody, even if they have a knack for saying the wrong thing or oversimplifying the situation. there are some people you aren’t prepared to lose, but they’re not prepared to live in your world either. i try to find a way to balance those relationships.

how do you take care of yourself?

michael: much of what i do for self-care is what others take for granted. the reality is that breathing, eating, and sleeping are my self-care. i may take a few moments out of a stressful situation to breathe quietly. i might get comfort food, or i might spend a couple of bucks on something that momentarily makes me feel better. i might have a nap or i might ask nathan to sleep on the couch because i really need to sleep. one of us always has to sleep on the couch so we can hear our son if there’s an issue. i also sit on at least three different mental health boards, and inevitably, i meet people who i can relate to and sometimes, having a conversation with them is so helpful too. but i think that both nathan and i feel more energized when other people come to us for feedback, support, or advice because it makes us feel that everything we’ve gone through or are going through can help someone else. it’s the reason why we are so involved in advocacy.

nathan: the odd thing about self-care is that you never completely empty your stress levels. you never come down, you never feel relaxed all the way — that’s the nature of trauma. it’s like you’re in a war zone and you light a scented candle. it smells nice, but the war is not gone, and your body still has that imprint of the stress. it took me a long time to feel comfortable leaving the house to go for a walk, even when michael was home, because of what might happen.

given how much support your son needs, do you ever get to have downtime as a couple?

nathan: during respite, we try to do stuff together, but most of the time, we are getting calls to manage an issue or physically intervene. it’s almost like we’ve ceased to exist as a couple because we’re parenting. someone always has to be on duty for our son, so the other one can have their independent, self-care time, but no one is on duty for us as a couple. it’s hard.

what advice do you have for other caregivers?

michael: document absolutely everything, even the things that seem so insignificant, such as calling an organization and not getting the support you need. the fact that we’ve been able to show everything that we’ve tried to do and every organization we’ve tried to work with has, at times, lead to some organizations trying to find solutions because they couldn’t pass the buck as there was nowhere else for us to go. we’ve also been able to keep our son out of jail because through documentation, we’ve been able to demonstrate the history.

nathan: create your own chosen community or your own chosen family early and do that by being open and by talking to everyone. you’ll find people who’ll judge you, but you’ll also find the gems and the people who get it — those who are going through a similar experience, or they’ve worked in the system, or they have their own mental health issues. eventually, you’ll build a community that will support you in some way. if everyone steps up a little to help someone else, whether it’s cooking a meal for the family or taking their child out for 30 minutes, it does something. it makes a big difference.

where would your son be without your support?

nathan: on the streets, dead or in jail.

michael: our son has been suffering for the past 14 years, since his first suicide attempt. he is chronically depressed, and he has openly shared that he has more bad days than good days. i feel guilty for keeping him alive knowing he continues to suffer, but i do what every parent would do — i jump in to save him.

do you have a caregiving story? email info@healthing.ca.

maja begovic is a toronto-based writer.

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caring for an adult son with autism

nathan and michael have rearranged their lives to keep their son alive amid lack of social supports, insufficient mental health care, policing issues and financial strain.

what led to your son’s mental health diagnosis?

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as a parent, how do you process such a traumatic experience?

who have you turned to for support over the years?