Raising children on the spectrum when you are also on the spectrum

Guest post by Amber Garza
“In this home” sign from Etsy seller OneCottageWay

My life is not typical. I have heard people call it everything from “complete and utter chaos” to “non-traditional.” Neither of those sat well with me. While I don’t view them as put-downs, I do feel like it’s an attempt at someone to put my children and me into a box we didn’t ask to be in.

My son is diagnosed with Asperger’s. I knew for many years that there was something different about him, but never really being around children, or wanting to have children, made everything with him seem different and confusing. I was learning as he was too, and sometimes that wasn’t a good thing. Sometimes I felt so behind — like I was failing him.

My daughter was diagnosed with moderate autism, she didn’t speak until she was about four-and-a-half, she had meltdowns multiple times a day. I knew she was on the spectrum. I had enough experience with the subject by that time I was confident in my guess.

Recently my therapist told me that I fall on the spectrum

However, I was also told how hard it was for an adult to get a diagnosis. Being told that was like a door I had been pushing at finally opening and letting in the fresh air, I knew it I was different, I knew it in my bones since before I had my son, I just didn’t know how to speak about these things.

Growing up in East Texas in the ’80s was equal parts wonderful and frustrating. There was so much pressure for me to be so may things at once, when all I wanted to do was disappear into the library that was a block away and read all the books I could find. I had fantasies that I would build a room somewhere like in The Never Ending Story, and I would live out my life haunting the library and reading the books at night.

Knowing what I know now, there is no way I am anything but on the spectrum. It’s been nothing short of empowering to have that knowledge.

It took me many years to be able to feel comfortable with myself. I had to lose my husband and see that what he said was a defect was my greatest gift, not just to myself, but my children as well.

To get that knowledge while I was going through what can only be called a horrific divorce is also empowering. All the things that were listed to me as my faults as a wife, and a mother and a person are not character defects. They are just the way my brain works and that’s not bad, it just is.

I can take my experience and use it to help my children

I know what it feels like to be a teenager on the spectrum, and to want to disappear into movies like my son does. I can encourage that comfort, but also encourage him to reach out to others like him. Others who like to tell stories, and dream about alternate storylines.

My daughter is seven and does more in a weekday than most people who work a full-time job. She is a whirlwind of emotion and reactions to everything around her. Everything is raw, everything is important. I know how it feels to feel things so deeply you think they will leave scars. I just can let her be herself when she is home.

When she acts out, where other parents tell me to punish, I talk and try to teach. When she colors the walls of the basement with chalk, I join her, it’s just chalk. When she makes her own chocolate milk and makes a mess, we clean it up together, then we share the drink. When she asks me to play, I play, when she asks me to leave her alone, I leave her alone. I don’t force anything if I can help it, because I know how it can be to feel overwhelmed and overstimulated at most things.

It took me many years to be able to feel comfortable with myself

I had to lose my husband and see that what he said was a defect was my greatest gift, not just to myself, but my children as well. I have become a better mother by being more open about my life and past experiences. It is not always easy, and many nights I go to bed exhausted, but I go to bed knowing I did the best I could. I don’t second guess myself anymore when it comes to my children.

My children are happy and healthy and learning about themselves, just as I am learning about myself with them.

Anyone else raising children on the spectrum when you are also on the spectrum? What are your experiences, tips, and lessons?

Comments on Raising children on the spectrum when you are also on the spectrum

  1. I love this so much, thank you for writing it! I loved what you said about interacting with your daughter, you sound like an awesome mom.

    I’m autistic, recently married, and don’t really “get” kids, but my husband really wants them and I had to spend years thinking long and hard about whether I wanted them, too, before we made the decision to get married. I arrived at the conclusion that I could have a very satisfying, fulfilling life with kids (or a very, very different satisfying and fulfilling life without them).

    You know, when neurotypical women say they don’t want kids, people tell them “oh, you’ll change your mind.” I never heard that, and instead when I *did* change my mind, I was met with resistance from the one person whose support matters most to me after my husband’s. My mom had a million reasons why it was a terrible idea for me to have kids, all of which seemed like they amounted to “you don’t have much experience with kids” (lots of people don’t!!) with a side helping of “you don’t deal well with surprises or noise, and guess what life is full of when you have kids” as if I don’t know that, and “what if they’re autistic,” to which I say it seems pretty likely and also I feel like I’m better-equipped than most to handle that. Luckily she seems to have come around mostly.

    When I look on the internet for the experiences of (or resources for) autistic parents, I instead find: 1. resources for neurotypical parents of autistic kids, 2. anecdotes by resentful neurotypical kids of autistic parents, and 3. the occasional thing of the sort I’m actually looking for, usually on personal Tumblr pages or some outdated and abandoned message board. I wish autistic people having kids was a thing that was acknowledged to a greater extent than “my parent is/was autistic and they were terrible at parenting in every way” and that there were resources out there to help us deal with our more… er… idiosyncratic challenges in a way that helps us to be good parents.

    • Are we allowed to post about other people’s products? I see something about self promoting. Apologies if this is not allowed! This is not my business but a group I subscribe to.
      As a fellow Aspie parenting aspie kids, I’ve found the resources here well worth the money. It is geared towards NT parents, HOWVER the facebook parents support group’s core members are auti and aspie people raising there own kids. The owners/founders are spectrum as well. It is nureodiversity oriented, does not favor functioning labels and there is massive amount of experience from all walks of life.

      • Thank You!
        I agree there is not really that much on the internet that talks about the experience of being a parent on the spectrum. If I had sees more things written on it, I would probably have understood things better. I guess that is why I started to write about things in the hopes of finding other parents who are going through the same things that I am.

        I do get emails from Asperger Experts, and I have found really good information from them. I did not know that there was a Facebook group, I will have to look for it. Thank You!

  2. I am pretty certain I’m on the spectrum too, but have never had any diagnosis. Lately I’ve been wanting to get one. There is something reassuring about the idea, in that it would explain a LOT.
    Every time I read a story about autism, I can always relate. Lately, I’ve noticed the exact words my parents used in reference to me, growing up. “Meltdowns” for example, were a regular thing for me too. I remember my mom and ex laughing about it. I never saw it as funny, but I think me being on the spectrum was the farthest thing from their minds. My parents never even considered taking me to a doctor for my behavioral issues.

    I recently read off symptoms of tactile defensiveness to my mom and watched her face change from humor to realization, as I read down the list of things that described me as a child – exact circumstances that were ongoing struggles in our house. I’ve grown out of much of it, but developed other issues that I cope with pretty well now. I’d like to find out for sure though what my collection of “quirks” says to a professional. I have a therapist, but are they able to diagnose?? I always thought a psychiatrist had to diagnose. My therapist doesn’t seem to have any interest in that, even though I’ve brought it up multiple times.

    Thanks for sharing your story. <3

    • Therapist here. (I’m a master’s level licensed counselor.) First of all, good for you for educating yourself and working to make sense of things that no one else has. Self-advocacy, especially when you’re an adult, is huge. And self-validation is something everyone needs to learn, and it sounds like you’re doing a great job with that.

      As far as whether your therapist can diagnose, I believe it depends on the agency. For instance, where I work (in a large clinic setting), I can diagnose anything except ADHD and ASD because they require more specialized evaluation that I’m not trained to do (though at this point I know them when I see them). Fortunately it’s easy for me to refer to our in-house psychiatrist and get the diagnosis made (or ruled out) as needed. And it’s important to note that just because someone sees a psychiatrist for eval, doesn’t mean they’re going to be prescribed or have to take medications (a lot of people are concerned about this). It’s just for information-gathering purposes.

      You might ask your therapist how you would go about getting a diagnosis and, if she can’t do it, whether she can refer you to someone who can. It would be extremely useful information for both you and her going forward, if you choose to continue therapy with her. Good luck!

  3. Hello. What an interesting post! My son was diagnosed ASD when he was 5. I was explaining what this meant to my mum who was adamant that there was nothing to worry about as he was just like me as a child! Ok then. More comments from people on the spectrum telling me that I am also on the spectrum galvanised me into seeking clarification and I was diagnosed too. I got really high scores too, it was pretty surprising to me! Anyway, my psychologist was really cool and highlighted that I must understand my boy really well (yes!). I wish I’d had more courage/social skills when dealing with his school teachers, but I didn’t. Maybe that would have been the case anyway as I was a young mum, and confrontation isn’t my style. Anyway, we have a really close bond and both do much better not forcing ourselves to be social on other people’s terms. I don’t know what I’d do with a kid who wanted play dates and birthday parties.

    • You are welcome.
      I was honestly nervous to share our story, but I thought that if I could be a part of a larger dialogue on parenting while on the spectrum my nerves would be worth it.

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