The Ties That Bind Mothers of Autism Spectrum Children

three moms talkingI’ve been organizing and leading therapeutic support groups for mothers of children on the autism spectrum since 2008. During my second semester in graduate school, a series of serendipitous events led to the opportunity to design and lead a group for a local nonprofit organization, and it took off like wildfire. During the past six years, I’ve met hundreds of mothers who have children with varying degrees and severity of autism and related issues.

Often, the children are so different that if you put them all in the same room together, they wouldn’t appear to all have the same condition. But what’s remarkable is that their mothers all have several things in common that extend the limits of ethnicity, race, finances, religious beliefs, and marital status. Often, these mothers would never have been even in the same room together, let alone become a network of support for one another. Despite their differences, I continually see striking similarities among these women. Technically, I don’t think I can call it “research,” but rather “clinical observations” concerning the majority of the mothers who have attended my groups. Here are just a few commonalities I’ve noted based on the data I’ve gathered:

Grief

Having a child diagnosed with autism spectrum “disorder” is devastating. Every single one of the moms I’ve met who have attended my groups has substantiated this. You won’t often hear me use such a definitive qualifier as “always” or “in every situation,” but I can honestly say that every woman who has attended my groups has described the experience of her child’s diagnosis as a difficulty that changed her life forever. The process of grieving the loss of a healthy child and learning to live with a “new normal” is one of the greatest challenges these women have had to endure.

Unfortunately this grief cycle does not end with traditional acceptance and closure, as it is not a death in the traditional sense but rather the death of a dream and a relearning about the new circumstances that will change the family forever. It’s cyclical grief and it’s dynamic and changing in nature. Sound a bit dramatic? It’s not. It’s their reality. Autism affects almost every major functioning process of a child: communication, behavior, sleep, health, social interactions, education, and activities of daily living. If that’s not enough, these kiddos are often notorious for unknowingly putting themselves in harm’s way. This makes for a perfect storm of heightened awareness on top of the grief cycle; an exhausting combination, to say the least.

Fear and Worry

It’s no surprise that mothers of autism spectrum children worry—about the future, what will happen after they die, if their marriage will survive the stress, how this experience will affect their other kids. These are at the top of the list. Most of them worry throughout the day, fearing the dreaded call from school. This is the call that usually starts off, “Ms. Jones, this is Normalville Elementary School calling. Little Jimmy jumped into the retention pond at recess today. He’s fine, but a little wet, and we think it would be best if you picked him up.” (True story, though names have been changed.)

Feeling Misunderstood

Everyone has experienced being misunderstood, but it seems these moms have more than their fair share. While moms of kids who have issues such as Down syndrome, a physical disability, or a terminal illness seem to receive a great deal of compassion and kindness from others, those of us with autistic children find this area lacking. I overheard one mom say, “When your kid is diagnosed with cancer or your spouse dies, people ask how they can help. But when your kid is diagnosed with autism, no one brings casseroles.”

Judgment is often the alternative. Extended family start telling you that your child needs harsher discipline. Some friends try to help by telling you their kids “do the same thing,” unaware that their attempt to normalize your situation just made it worse. Strangers share disapproving glances and “you’re-a-bad-mom” stares as your 12-year-old child melts down in the supermarket checkout line. Teachers accuse us of being “overly emotional” or “unstable” when we tear up during an individualized education program meeting. It’s rough.

Bravery, Courage, and a Sense of Humor

Before readers accuse me of being too negative, let me end on a positive note. In all of the data and information I have collected over the past six years, I have consistently seen that autism moms have a remarkable level of courage. And they can laugh—at themselves, at their situation, and at the ridiculousness that accompanies parenting a child on the spectrum. Now, keep in mind that my data are skewed a bit, as my sample is all autism moms who have attended my support groups. This means these moms in particular know they need a little help, admit it, are willing to make time for their own self-care, and commit to the group process. As John Wayne said, they “are afraid, but saddle up anyway.” They make courage a daily practice, and they live researcher Brené Brown’s statement that “courage starts with showing up and letting ourselves be seen.”

Considering the upstream swim they endure, their courage, sense of humor, and connection with others in the group helps keep their heads above water when they feel like giving up. As a group leader and fellow autism mommy, I find that they often inspire and strengthen my own resolve to “just keep swimming.”

© Copyright 2013 GoodTherapy.org. All rights reserved. Permission to publish granted by Janeen Herskovitz, MA, LMHC, therapist in Ponte Vedra Beach, Florida

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Candace

    Candace

    November 1st, 2013 at 11:39 AM

    As a mom of an autistic child, I have to say that it is very encouraging that over the past several years in particular I have seen much more growth and knowledge about autism than there once was and that is support right there for the things that our family goes through. Just knowing that there is now an awareness out there that at one time did not exist makes it so much easier for me to find services for him to and for our family to get the support that we need too to get through what are often some pretty tough times.

  • Janeen h

    Janeen h

    November 3rd, 2013 at 3:24 PM

    Candace, that’s so true. It’s comforting to know that awareness has increased. I’ve noticed a big difference now compared to 14 years ago when my son was diagnosed. Thanks for sharing.

  • Jeremy K

    Jeremy K

    November 2nd, 2013 at 5:06 AM

    A huge part of this is that the families of these kids so often feel terribly misunderstood. You are right, there is always someone telling you what you should or shouldn’t do, but with no real evidence to back that up. And that gets pretty frustrating to listen to all the time and try to manage. It hurts too because you know that people want to help but then they just say the worst things and that alone is frustrating.

  • Janeen h

    Janeen h

    November 3rd, 2013 at 3:26 PM

    That’s a great point, Jeremy. People really do want to help, but many are not sure how. A big part of the counseling I do is to help parents remember that and empower them to ask for what they need. Thanks for your comment.

  • Carmen

    Carmen

    November 4th, 2013 at 4:41 AM

    I read this and I know that all of the things that parents of autistic children are feeling, well they are well founded. You do worry a little more, you do have a fear for your child’s future… but there have been so many advances and so many tools and resources that are now available that perhaps were not once out there, so feeling good doesn’t have to be a bad thing either.
    I realize that I am saying this from the outside, but I hope that you will never give up hope because new research and advances are being made every day… there is hope out there, I just hope that enough families know this and are somewhat comforted by thsi thought that they are not forgotten

  • Janeen herskovitz

    Janeen herskovitz

    November 4th, 2013 at 5:04 PM

    Carmen, thank you for those sincere and hopeful words. The fact that they are, as you said, “coming from the outside”, makes them even more meaningful.

  • lorna

    lorna

    November 4th, 2013 at 4:18 PM

    Laughter and humor is such a cure all. I know that it doesn’t make everything go away but it can help you forget sometimes all the sadness that can go along with a diagnosis like autism. And there is a sense of sadness there even when you do your best to try to stay positive and look at the bright side of things.

  • Janeen herskovitz

    Janeen herskovitz

    November 4th, 2013 at 5:02 PM

    Lorna, that’s so true! In our support groups we laugh constantly. And it’s usually a “knowing laughter” which is incredibly healing. Thanks for your comment.

  • Lara

    Lara

    November 4th, 2013 at 8:42 PM

    The following was my Facebook status on November 2, 2013. Though I would share it with people who can really appreciate it. HUMOR HAS SAVED ME!:
    I have to preface this post by saying I love love love my boy and I’m posting this because part of what I love about him is his crazy silly strange sense of humor.
    Kaden’s excellent halloween adventures:
    act 1: Children come to the door trick or treating and Kaden meets them wearing his Zorro costume, screams “F***” and pelts the kids with candy.
    act 2: I take Kaden trick or treating in our still somewhat new neighborhood (i.e. people don’t know him well enough to think he is cute). He goes to the door of a lady we don’t know and says “I want to lick your face” instead of “trick or treat.”
    act 3: We are home eating dinner and we still occasionally have trick or treaters coming by. Kaden at this point is no longer allowed to hand out candy to the children since his unorthodox way of doing so is scaring the neighbors. I take the candy to the door and am passing out candy to a long train of children when one of the moms looks at me with eyebrows up and points behind me to Kaden who, having decided his costume is too hot, is now only wearing his boxer briefs. No big deal except, he’s got a maraca shoved between his legs and its rattling as he dances around in front of the door.

  • Janeen herskovitz

    Janeen herskovitz

    November 5th, 2013 at 2:42 PM

    LOL! That story is fabulous….because we couldn’t make this stuff up if we tried. Thanks so much for that big laugh. :)

  • Kathleen dewey

    Kathleen dewey

    November 5th, 2013 at 9:23 AM

    Thanks for this article. What you’ve Sid rings so true. My 27 year old son has Aspergers and I am sure I displayed all the behaviors/ feelings you identified. The grief IS cyclical because the difficulties our kids face persist. Laughter and finding other parents in the same situation does help. Finding a counselor that actually understand what we are going through would be nice but it isn’t easy.55

  • Janeen herskovitz

    Janeen herskovitz

    November 5th, 2013 at 2:46 PM

    Kathleen, thanks for your comments. In the field of counseling, serving people via the internet is controversial, but in our parent populations, is very necessary. I have several clients that I see via the web and they have found it more helpful then seeing someone in person who doesn’t live the life. Very good point.

  • Trudi

    Trudi

    August 27th, 2015 at 6:12 AM

    He looks normal… Handsome … Then it happens… Something’s off ….ripples through him… Grasping for a line to hold onto… Doesn’t compute… Anger, tears… Wants to be like the others teens.. Knows he’s not… Feet just on asperger line…mom tries to do the dance of protect vs independence .. Looks at me and says honestly don’t know if I can do this mom. Guess what .. Middle girl showing signs worse than 1st. Loved the article … Grief you bet weekly… 3rd child… neurotypical but getting frustrated with other two.. Juggling, duck and rolling… Keep chanting “this is our normal “

  • janeen

    janeen

    August 28th, 2015 at 10:25 AM

    Trudi, my heart goes out to you. Thank you for sharing. Sounds so familiar. :) Take care of yourself…and keep swimming.

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