Autistic Adults as Parents

Should Autistic Adults Have Kids?

Mom kisses son as he heads off to school
Getty Images

Can an adult with autism be a successful parent? The answer is absolutely yes, under the right circumstances. While a person with moderate or severe autism is unlikely to have the skills to parent a child, many people with higher functioning autism are ready, willing, and able to take on the challenges of raising kids. Many aspects of parenting are tougher for moms and dads on the spectrum. The reverse, however, is also true: there are some ways in which parenting is easier if you're autistic (especially if you have children on the autism spectrum).

High Functioning Autism and Parenthood

In 1994, the Diagnostic and Statistical Manual of Mental Disorders (DSM) was changed to include a new form of autism. Called Asperger syndrome, it included people who would never before have been considered to be autistic. The addition of Asperger syndrome to the DSM changed the way people thought about autism.

People with this high functioning form of autism were smart, capable, and often successful. While they may have had significant problems with sensory issues and social communication, they were able (at least some of the time) to mask, overcome, or avoid these challenges. Many people with Asperger syndrome got married or found partners, and quite a few had children.

Because Asperger syndrome didn't exist until 1994, very few of the people who grew up prior to that time received anything like an autism spectrum diagnosis—at least until they had children themselves.

Then, in some cases, while pursuing a diagnosis for their children, parents discovered that they, too, were diagnosable on the high end of the autism spectrum.

Meanwhile, children were growing up who had, in fact, received Asperger syndrome diagnoses as little ones. These children were growing up with an autism spectrum diagnosis and received therapies to help them manage their challenges.

For some people, autism and its challenges stood in the way of parenting. For many others, however, it didn't. And, of course, many people with autism simply want what many of their typical peers want: a family.

In 2013, Asperger syndrome as a diagnostic category was removed from the DSM. Today, people with the high functioning symptoms once called Asperger syndrome now have an "autism spectrum" diagnosis. This, of course, had no particular impact on individuals' desire to become (or not become) a parent.

Myths About Autistic Parents

There are a great many myths surrounding autism. These myths can make it hard to understand how an autistic person could be a good parent. Fortunately, myths are, by definition, untrue! Here are just a few such misunderstandings about autism:

  • People with autism don't feel normal emotions. While people with autism may have slightly different reactions to particular situations or experiences than some of their typical peers, they most certainly do feel joy, anger, curiosity, frustration, delight, love, and every other emotion.
  • People with autism can't love. As stated above, this is completely untrue.
  • People with autism can't empathize with othersIn some cases, it can be hard for autistic people to put themselves into the shoes of someone else who wants, feels, or reacts in ways that are outside of their own experience. But of course this is true of all people: it's hard to empathize, for example, with a child who wants to do things you dislike or dislikes things you love.
  • People with autism can't communicate well. People with high functioning autism use spoken language as well as (or better than) typical peers. They may, however, have difficulty with "social communication," which means they may need to work harder than most to make sense of body language or subtle forms of communication.

Reflections on Parenting With Autism

Jessica Benz of Dalhousie in New Brunswick, Canada, is the mother of five children. She received her autism diagnosis as a result of seeking answers to her kids' challenges. Here are her reflections and tips on parenting as an adult on the autism spectrum.

What led you to discover your own autism diagnosis? Do you recommend seeking a diagnosis if you think you MIGHT be diagnosable?

My own diagnosis came about as an adult after two of my children had been diagnosed and we began to discuss family history with one of the psychologists we worked with. When I mentioned certain experiences as a child lining up with what I saw in my own children, a light bulb went off. I pursued further screening and assessment from there if only to better understand myself as a person, and as a parent.

I think that more information is always better, especially about ourselves. If someone feels like autism might be part of the tapestry making up their own lives, it is worth asking about it and asking for an assessment. Just as we check laundry labels for care instructions, the better we understand what makes up our own lives and selves, the better we can ensure we are using the right settings in terms of self-care and interaction with other people.

Did learning that you are autistic affect your decision to have (more) children? and if so, how did you make the decision?

Certainly, knowing that I am autistic impacted my decisions, but by the time I was diagnosed, we had three children (we now have five). So it didn't make us afraid of having more children, it simply meant that we had a really wonderful understanding of the children we do have. Having a better understanding of how I felt at times, why I thought some things were so much easier for other people than they were for me, and feeling like I just wasn't doing it all well enough, empowered me to create positive change within my life to become a more engaged and intentional parent.

I remember feeling guilty when my oldest was young that I desperately looked forward to bedtime. I felt like it was the first time I could really breathe since she'd woken up in the morning. It wasn't that I didn't like parenting, I enjoyed it immensely and I loved exploring the world with her. But the guilt I felt because I really looked forward to bedtime and a couple hours of time without having to be 'on' confused me. Recognizing through my own diagnosis that those couple hours a day are a necessary period of self-care enabled me to parent without the exhaustion and burnout I had felt previously.

Further, I recognized other things I needed to have in place to feel like I could thrive as a parent. I had always been a pretty laid back person in terms of routine, cleaning, planning, and scheduling. That laid back approach to life led to a lot of stress when I needed to get things accomplished on a timetable, or when there was an unexpected demand.

Turns out, parenting is just full of unexpected demands and timetables that are not your own! I decided to experiment with applying the things I used to support my children to my own life,  and much to my surprise, things got easier. I implemented a routine to manage the house, a routine to manage the day. I make sure to write up a daily schedule each day (with visual components as well for younger kids) so we can all see what is happening each day and know how to plan in advance.

Simply recognizing that I deserved to give myself the same supports I offer my children made me feel like I was both meeting my own needs and showing my children that they are capable of doing the same as adults and managing their own lives. So many people hear the word autism and envision someone needing other people to establish those supports.

It is important to me that my children see that they are capable of directing their own lives and advocating within their lives for their own needs. Modeling that myself is one way they are able to normalize what they all too often hear of as 'special needs.' We all have specific needs, even people who are neurotypical. We have an obligation to empower our children to recognize and support their own needs.

Now, why do we have five children? I mean, they are loud, they are chaotic, they argue, they wind each other up, and someone is always bothering someone else. However, they also understand each other deeply, they support each other completely. In a world where friendships and social interactions are hard, these children are growing up so immersed in learning to compromise and work collaboratively that they are well equipped to engage with other children. They will always have a family support network in their lives who understand them absolutely, even if they might not always agree. That is important to us.

Did learning that you are autistic change the way you parent?  For instance, did you decide to ask for more help, change the way your respond to 'bad' behaviors, etc.?

It has made me more intentional, and more aware. It has also given me space to accept that I also have an obligation to meet my own needs so that I am better able to parent my kids. I have learned to recognize when I am overwhelmed before I reach the burnout stage, and I have learned to take some time to recharge.

I also reflect on my own childhood, and how terrible I felt when I couldn't stop crying over something that should have been a minor issue, or when I simply came home from school and was in an abject rage for no reason. I remember the shame I felt as a child about those things, and I want to be sure my kids never feel that. I was lucky, and received appropriate parenting and response to those things accidentally, by virtue of parents who understood me deeply.

I was never punished and was always unconditionally loved through those meltdowns, though I didn't know then what a meltdown was. But I still remember feeling the shame of being unable to control my feelings and emotions the way everyone else seemed to be able to. I was a model student, always at the top of my class, and I lived in terror of someone finding out that I cried because I had to say hello to a friend in a grocery store.

I strive to help my kids understand themselves. I want them to know that I understand why something unexpected can throw off the whole day and that I don't blame them or feel like they should be able to cope better. If I had known that my brain didn't process things the way everyone else's did, I think I could have been kinder to myself. As a parent, I want to teach my children to be kind to themselves.

What kinds of parenting challenges do you face BECAUSE you are autistic?

Let's start with play dates. These are a special sort of misery for me. First, I either have a ton of people coming into my environment (Egad—no!) or I have to take my kids to someone else's environment. In general, other people may have childproofed, but no one other than other parents raising kids with autism REALLY childproofs. So, I am stuck being hyper-vigilant to ensure that nothing is broken while trying to strike up small talk and never quite knowing when to stop talking. All play dates require an entire afternoon of downtime for all of us, and probably a frozen pizza night to recuperate.

Let's move on to sensory challenges. I am someone whose stated dream job was manning a fire tower. No people, no noise, no intrusion, just silence and open space. "Wouldn't you be bored?" people asked. I didn't understand the question.

Obviously, life in a house with five kids looks a bit different. Headphones are ubiquitous in our house. A few years ago I got tired of yelling at everyone to 'Turn that down!' I gave up and got everyone their own headphones so I am able to keep the household volume to a dull roar. Quiet time is non-negotiable. Most of the kids have stopped napping, but they are still asked to spend some time in their room each day quietly reading, playing on a tablet (oh, how I love technology!) and simply existing without bouncing off the couches and walls.

When they are in school, this only applies to younger kids, but on weekends and throughout the summer this is for everyone. Sure, I tell them that it's important to learn to relax and recharge themselves. But really, it's how I get from one end of the day to the other without becoming a very cranky parent. That 45 minutes gives me time to have a cup of still hot coffee, remember to breathe and head back in to an afternoon of chaos and fun.

Does autism actually help you to do a better job as a parent of kids with autism? If so, how?

Absolutely. I think the hardest part of parenting kids with autism is not understanding. It is easy to say all the right things; it is easy to say that we know they can't control a meltdown. But to truly understand those feelings, to have experienced them, to know what it is to feel like your mind is running away and taking your emotions and body along for the ride—it's impossible to explain to people who have not experienced it.

Having experienced it, though, gives me a window into the moment they are living. It lets me meet them where they are, instead of asking them to meet me halfway. It allows me to be a powerful advocate for them. It allows me to tell them that, 'even Mom feels like that sometimes.'

What are some of the coping techniques and strategies you've mentioned that you'd like to pass along?

Accept your comfort zone. It's there because it works. If you can get from one end of the day to the other with everyone being loved and respected, having met the needs for the day and kept everyone safe, you've done enough for the day. Parenting isn't a competition, you don't win a prize for being the Pinterest Mom. If your child shows up at school with their shirt on inside out because the right way around was going to be a fight, hearing your child was the best option you had. Yes, even if it was picture day, and you got there just as the bell rang, while still wearing your pajama pants. You might want to aim for real pants for the IEP meetings though—it seems to set the right tone.

Have you shared your autism diagnosis with your kids?  If so, how did you do that?

Yes, because it has been an ongoing discussion in our house, it isn't a big reveal. We talk about neurodiversity as an important part of the world, and about all the people in the world whose brains work differently. I model meeting my own needs and encourage the kids to do the same. When they see me saying, 'I have had it, I'm going to take a bath for half an hour,' it is a lot easier for them to tell me when they need a break because it's a normal and acceptable thing in our family.

Do you find that your autism makes it harder to manage neurotypical expectations (among kids' parents, therapists, teachers, etc.)?

It can be, particularly if I reveal my own diagnosis. We recently had someone working with my 5-year-old who was using some atrocious and abusive practices. When I voiced my concerns and revealed my own diagnosis to him, he visibly shifted, then every other sentence was finished with, 'Do you understand?' as though I were not capable and competent.

I find myself being a particularly outspoken voice at times. The vast majority of people I work with are willing to listen and are kind and respectful. However, I have the education and experience to draw on that many other people do not, and I wonder sometimes if my strong opinions and fierce advocacy are seen as being a difficult parent without that to back up my statements.

I tend not to process well when it is time to stop talking, to stop teaching, to stop explaining, and I press on until the discussion goes my way. Sometimes, I don't think that goes over well. I don't know that I would be as outspoken an advocate were it not for my own experiences. I would like to think I would still be the voice my kids deserve, but I suspect I might not have had quite so many contentious meetings along the way if I had not lived through those moments and experiences myself.

Are there autism-related therapies that help you better manage parenting?

I have not ever found a one-size-fits-all therapy to work for any of us. Just as no two people with autism have the same identical needs, no therapy will have the same impact for everyone.

We have employed a lot of techniques taken from occupational therapy to make our family run more smoothly. We use visual schedules, routines, and a lot of practice at basic life skills. We use speech therapy, and even PECS as necessary to facilitate communication. We do yoga poses to help with some mind/body work, and personally, the best thing I have found was the work done with a therapist using CBT to learn to let go of my own expectation of a 'normal' that doesn't exist for anyone, anywhere.

Parenting is a matter of being a tour guide; sometimes you have to change the journey to meet everyone's needs. You just have to figure out how to do it in such a way that no one feels like they are missing out.

Parenting Reflections From a Dad With a Lifelong Autism Diagnosis

Christopher Scott Wyatt is an adult with autism (and a PhD) who blogs about his experiences at http://www.tameri.com/csw/autism/. He and his wife are the foster (and potentially adoptive) parents of children with special needs.

What led you to discover your own autism diagnosis?

Originally diagnosed as mentally retarded at birth, the diagnostic label would change every few years. It was “autism” by 2006 or so when the DSM-IV-TR changed things yet again and was more widespread. Since the labels kept changing, I’m not sure they were helpful; if anything they limited options early in my education. Today, we’re ambivalent about the diagnoses of our children. It can help, and it can hurt.

Did learning that you are autistic affect your decision to have children? And if so, how did you make the decision?

Not really. We waited until we owned a house and were reasonably secure, which is probably more about our personalities in general. My wife and I wanted to offer a good, stable home for any children, whether natural or foster-adopt.

Did learning that you are autistic change the way you parent?

It's possible that my autism makes me more patient, if only because we’re aware of how I experienced education and supports. I’m patient with the needs of the children for quiet, order, and a sense of control. I understand wanting things to be orderly and predictable. They need that, as foster children, and they will need it if we're able to adopt.

What kinds of parenting challenges do you face BECAUSE you are autistic?

We don’t have a support network, at least not locally in person. We have ourselves and the children, with the supports provided in the schools. So, in that sense, we’re unlike other parents because we don’t have the social interactions many parents do. Play dates don’t happen because the other nearby children are older than ours.

What are some coping techniques and strategies that you'd like to pass along?

Quiet time and quiet spaces for us and the children. Bean bags with books help them a lot. We also have sensory items: stress balls, thought putty, spiky balls, and other things for them to play with when stressed.

Do you find that your autism makes it harder to manage neurotypical expectations (among kids’ parents, therapists, teachers, etc.)?

I get frustrated quickly with the schools, social workers, and courts. I don’t understand why the needs of the children aren’t a higher priority. My wife reminds me to take a walk or go somewhere quiet after dealing with 'the system' that doesn’t work for the children.

Are there autism-related therapies that help you better manage parenting?

I’m not a fan of most behavioral therapies, based on negative experiences. My coping mechanisms are art: music, drawing, painting, writing, and photography. We’ve found that coloring and drawing help the girls, too. When the girls need to slow down and refocus, music (curiously, Elvis - Love Me Tender) works.

Our goal is to remind the girls that labels don’t define them to us and should not define them to themselves.

Sources:

Deweerdt, Sarah. The joys and challenges of being a parent with autism. The Atlantic, May 18, 2017.

Interview with C.S. Wyatt, July 2017

Interview with Jessica Benz, July 2017

Kim, Cynthia. Motherhood: Autistic parenting. Autism Women's Network, January 22, 2014.

Continue Reading