Autistic Adults as Parents or Guardians

Adults with autism can be great parents or guardians. While a person with moderate or severe autism is unlikely to have the skills to raise a child, many people with high-functioning autism are ready, willing, and able, to take on the challenges of raising kids.

Many aspects of parenting and guardianship can be tougher for those on the autism spectrum. The reverse, however, is also true; there are some ways in which raising kids might be easier if you have autism (especially if the children in your care are also on the spectrum).

This article starts by explaining what high-functioning autism is and common misconceptions about the autism spectrum. It then explores the experiences of two parents with autism, detailing not only the challenges they face but the parenting skills afforded to them because they have autism.

What Is High-Functioning Autism?

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

People with this high-functioning form of autism were known to be smart, capable, and often successful. While they may have had problems with sensory issues and social communication, many were able to mask, overcome, or avoid these challenges.

Because Asperger's wasn't classified until 1994, many people who had grown up with the disorder didn't receive an autism diagnosis until later in life when they themselves had kids.

In 2013, the fifth edition of the DSM (called the DSM-5) removed Asperger's syndrome as a diagnosis. Today, there are three levels of autism spectrum disorder (ASD), with Level 1 encompassing Asperger's and Levels 2 and 3 defining those who would have been considered "moderately" or "severely" autistic.

Facts About Autistic Parents

There are a great many misconceptions about autism that cause others to make incorrect assumptions about the ability of people with autism to raise kids. Here are just a few:

• "People with autism don't feel normal emotions." While people with autism may have slightly different reactions to situations or experiences than their neurotypical peers, they do feel joy, anger, curiosity, frustration, delight, love, and every other emotion.
• "People with autism can't empathize with others." In some cases, it may be hard for a person with autism to put themselves "in the shoes" of someone else. But this is true for anyone. Although people with autism may lack somatic empathy (a physical response to what someone is experiencing), they often have affective empathy (the ability to understand and respond appropriately to what someone is experiencing).
• "People with autism can't communicate well." People with high-functioning autism use spoken language as well as their neurotypical peers. They may, however, have difficulty with social communication. As such, they may need to work harder to make sense of body language or more subtle forms of communication such as nonverbal cues.

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. 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, and 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 that understands 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 or change the way you respond to "bad" behaviors?

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 playdates. These are a special sort of misery for me. First, I either have a ton of people coming into my environment 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 hypervigilant to ensure that nothing is broken, while trying to strike up small talk and never quite knowing when to stop talking. All playdates require an entire afternoon of downtime for all of us, and probably a frozen pizza at 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, 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 hot coffee, remember to breathe, and head back in to an afternoon of chaos and fun.

Does autism 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.

Does your autism make it harder to manage neurotypical expectations among other kids' parents or guardians, therapists, teachers, and others?

It can be, particularly if I reveal my own diagnosis. We recently had someone working with my five-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 raising kids?

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 on 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 (Picture Exchange Communication System) 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 cognitive behavioral therapy (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, Ph.D. is an adult with autism who blogs about his experiences. He and his wife are the foster (and potentially adoptive) parents of children with disabilities.

What led you to discover your own autism diagnosis?

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 biological 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 support. 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 them.

What kinds of parenting challenges do you face?

We don’t have a support network, at least not locally in person. We have ourselves and the children, with the support provided in the schools. So, in that sense, we’re unlike other parents because we don’t have the social interactions many parents do. Playdates 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 other kids’ parents or guardians, therapists, teachers, and others?

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, which 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.

Summary

People often question whether individuals with autism can thrive as parents or guardians given the potential limitations in social communications and skills. The truth is that, while people with moderate to severe autism will likely lack the skills to raise a child, people with high-functioning autism can be extremely skilled parents or guardians.

While some aspects of raising kids can be challenging (such as dealing with the sensory overload of rambunctious kids), other aspects may be well suited for people with autism.

Because people with autism understand the nature of meltdowns, they may be more empathetic and less reactive when a child experiences one. They may also be better equipped to provide order and structure to a child's life because of the skills they learned through occupational therapy, speech therapy, and other forms of therapy.

One of the bigger challenges faced by parents with autism is a potential lack of social interactions that parents and guardians generally rely upon for support. Speaking openly about autism—not only to teachers and other guardians but to one's own kids—may help overcome this.