When “I Just Don’t Want My Kid to be Labeled” Hurts

The first time I met a parent who didn’t want to talk about her child’s autism was at Beth’s preschool. The parent had a child who was a year ahead of Beth in the 4-year-old classroom. Her child had some subtle and brief repetitive hand movements, seemed to zone out sometimes, and I noticed how he answered questions in a very factual way with memorized scripts. He didn’t need a full-time aid to go to school like my child did, but clearly he was on the spectrum and on the “high-functioning” end. So, I tried to talk to the mother. I opened up about my child’s autism and our home program and got back absolutely nothing in return. I was confused, but I still tried to talk to the mom as we waited in the hall to pick up our children. And then I just gave up because it was clear she didn’t want to acknowledge our children shared some similar traits, let alone use the “autism” word. This parent was part of the “I don’t want my kid labeled” crowd.

Fast forward to the end of the school year when I decided the therapy program we had wasn’t really working as I had hoped and we were Going It Alone (http://wp.me/p2OomI-3). We were at the end of the school year, I was about to say goodbye to her last therapist, and I was sitting watching my child struggle through the end of the year class production (songs, fingerplays, etc…all of which she could not do). At the end I could barely contain my tears of sorrow, and I look over at the mom of the boy who had autism and she didn’t want to admit it. She was high-fiving her husband and literally doing a fist pump. We locked eyes and she knew that while it was a great day for her because her child did well, it was not a great day for me. And then she looked away. I thought, good for you honey, you think you did something magical for your kid and you won some sort of game that he can pass? And, I admit, I thought, fuc* you. Thus began my struggle with the “high functioning” part of the spectrum.

For a long time I have struggled to accept that the high-functioning kids and my daughter really have the same condition. And I have had feelings of resentment and anger when some parents complain about their child’s problems, which quite frankly seemed minor compared to my child’s struggles. But I have been fortunate enough to spend time with parents of high-functioning kids and over time I have been able to gain empathy.  Too advanced for the “autistic support” classrooms, the high-functioning kids are put with neurotypical children and somehow have to manage. I have personally witnessed high functioning kids trying desperately to interact with their neurotypical classmates, and I have seen them shunned by their peers because of their uniqueness. It is painful to watch, and I get where the parents are coming from now.  So, I thought I had made significant strides towards acceptance of high-end of the spectrum. Until yesterday.

I was at the playground, helping my child stay alive (she likes to climb down parts of the play equipment that she should climb up and the last thing I need is a bad fall and an emergency room visit). I passed by a mom saying, “She has social issues and other issues but I don’t want her labeled.  I mean, she will beat this thing, and then…” I got a flash of anger that took me back to the high-fiving “this is a game to win” mom back in Beth’s preschool. Here are thoughts that went through my head: Lady, you have no idea what a real diagnosis is, what autism is, this is not a MF game, your kid doesn’t have anything or else it would be obvious, and on and on. And then I took a deep breath. There are kids with high-functioning autism that really need help, so why am I so angry? What is the real issue here?

And then it hit me. For a mom to not want her kid labeled with autism means she does not accept my child. It means that autism is such a horrible thing to her that she would never want to even fathom giving her child such a label. Ouch, that hurts…it cuts me really deep. The mom’s inability to accept the autism label triggered an anger in me that is below the surface waiting to come out. The anger was too strong and out of proportion with the situation, which can mean only one thing in autism land. Grief of course (http://www.abilitypath.org/areas-of-development/delays–special-needs/states-of-grief.html). This is my issue, I own it, and I need to work through it. But at the same time, is it okay to say, “I don’t want my kid labeled” and treat autism like a game to beat instead of saying “My child has some challenges, but I don’t think it goes to the level of needing a diagnosis.” From my point of view, the former is discriminatory and it is hurtful. I work very hard to understand the high-functioning end of the spectrum and to squash down my own jealousy and resentment, so I expect that parents of kids on the high-functioning end should work to be respectful of my child who works very hard every day to make small gains, who could not pass in a typical class by any stretch of the imagination, and who most definitely has autism.

See here for part 2: https://fumblingthruautism.wordpress.com/2013/10/21/when-i-just-dont-want-my-kid-to-be-labeled-hurts-part-2/

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13 thoughts on “When “I Just Don’t Want My Kid to be Labeled” Hurts

  1. I totally know what you are saying, and you are spot-on. I know a mother that won’t tell her son he has Autism, and he is “high-functioning” – which is a term I hate. It implies that kids that can’t speak are “low functioning” or somehow inferior. Wish docs could give us better terminology… but I digress.

    I love your blog, and you have helped me so much since my son was diagnosed last July. Thanks for sharing your honest feelings… 🙂

    • grahamta says:

      Yeah, we need to all work through this stuff. No prob…it is my cheap therapy!

      • I think that people like the person you are talking about in the story ultimately are the ones that lose out. Not to mention what their children lose – a parent that will never accept them no matter how hard they try.

        Not only do they not accept your child, but they won’t accept their own!

  2. JJONESMIM says:

    I so admire your transparency to share your grief and struggles! Beth was blessed with a very special Mommy and Daddy!

  3. Janet says:

    I like to read your blog. My son does not have autism, but down syndrome. We share many similiarities with you as a special needs parent. My son has lots of medical issues and several near death incidents, so he is a lower functioning downie. (3yr – 5 yr old even though he is 18). While being a down syndrome parent you can’t deny your child has this; it’s on their face and other physical characteristics.The bittersweetness of it all comes in waves.I appreciate your walk and we can both go bravely into the world helping our children do the best that they can. Thank you for your honesty that I sometimes find it hard to do.

  4. My darling friend, just one caution here. I think you may have jumped to conclusions a little too quickly with that first mom. No, she didn’t engage w/ you in the school hallway, but that doesn’t mean she’s in denial about her child. Sure, she could be, but I don’t think you can know that for sure yet. Maybe she had just been through a hellish day and didn’t feel like talking. Maybe she just didn’t have the emotional energy to have that conversation right then. Or perhaps she has an autism spectrum disorder going on herself and doesn’t know how to have a reciprocal conversation.

    You know my situation. Sometimes I feel bad talking about the struggles we face because I know they’re small potatoes compared to a lot of other people. But they still hurt us.

    I think you’re right about dealing with grief. Very insightful way to look at this. I always see you so busy trying to deal with everything that’s going on with “Beth” that I worry you’re not able to take the time you need to process how YOU feel. (I know. Time is a bitch right?)

    In any case, I love you guys and I’m constantly amazed at what you do.

    • grahamta says:

      Thanks Trish, I understand, and my experience is my experience. But I saw her and tried to interact with her nearly every day for a year. She saw my kid flapping, trailed by a therapist, totally overwhelmed, etc. She stood next to me and high-fived and my daughter was really out of it at that day. So out of it the other parents were speechless and uncomfortable with me afterwards. You will just have to trust me on this one because I was there. As for my grief, I think I am handling it the best I can given the situation. I am owning up to my confusion on the high functioning side so I can move on and be a better friend to all on the spectrum. I hope that makes sense.

  5. I never heard of aspergers why my son was little 20 years ago. I had to deal with people wondering why he was so sensitive,spaced out and didn’t know how to make friends. Every year teachers would say he was immature in September and by November said that he was maturing and I explained, no he is that way in all new situations and had nothing to do with getting more mature or older. He just taking longer to adapt to new anything and everyone.

    I was naturally annoyed with parents who complained about their kids not having enough friends, having too many sports or trouble dating when I just wanted my kid to have a friend. I think that it might have been easier if we had a label that could explain it all. Even in college the disability dept. didn’t understand aspergers and expected him to ask for help.

    Its so normal and easy to be angry at parent’s who don’t get what we as individuals are going through. Over the years (my son is 25 now) I have learned that the best coping method is to avoid those people who make me uncomfortable. One thing I hate is when people look at my son and say he is doing better in efforts to be supportive. They have no idea what they are talking about, but they mean well. I tell them that they can’t ever know what its like to worry all the time about the future when i am gone and then I change the subject.

    On a funny note, my husband and son and I were at the airport last year being screened. My son wrote R and L in big marker on his socks so that he would always have the same sock on the same feet and they would theoretically be more comfortable. The airport person smiled and said “he is special isn’t he?”

    Not sure if any of this helps, but if that mother with the high functioning son doesn’t want to talk about autism or her child’s problems, I can understand that and it may have nothing to do with what she thinks about other children with autism. I just think that she should be friendly and polite to all parents. but she certainly has her own problems to cope with, even though they don’t seem as big…

    Love your blogs, sooo glad its cheap therapy….

    • grahamta says:

      Thanks…great insight. So frustrating to have the issues back when people didn’t understand. A long, hard road. Also, they kids who are just functional enough to be in a typical classroom without an aid…I shudder to think….

  6. I left an abusive marriage of 16 years with 7 kids in tow. My then-14-month old son wasn’t walking, communicating, and had not met many milestones. He would not be touched, screamed if he was, flapped his hands, functioned poorly in new settings. We were in a domestic violence shelter and it was a nightmare for my boy. Anyway, the workers and therapists at the shelter started suggesting that he see a pedi neurologist, so I took him to the Cleveland Clinic. Not 5 minutes into the visit, the Dr. and his colleagues were throwing around the word ‘autism’ and it scared me. Not because I couldn’t deal with an autistic child, but because I’m his mommy and I truly felt that they were incorrect. Lots of testing. Much inconclusive data. He began attending a special needs school. I knew he had special needs, but I really didn’t think he was autistic. Not long into his school year I was asked to come for a meeting. The therapists at the school and his teacher all thought he was developmentally delayed because of the abuse from his dad, but that with proper therapy and a lot of work, my boy would catch up to where he needed to be. We all committed to getting him there… and we did. He’s 5 now. There is no more talk of autism. He’s a healthy 5YO. I didn’t want my child labeled because I believed that he needed time and lots of help. If autism had been his eventual diagnosis, I would have moved on to do whatever I could for my boy. I know my case may not be the ‘norm’ but there are always OTHER reasons people don’t want their children labeled.

    It’s easy to filter other people’s motives through our own struggles and circumstances, but it doesn’t automatically mean that what we perceive in others is correct. Just wanted to share another viewpoint.

    • grahamta says:

      Thank you for sharing your experience. Yes, there are other reasons and I thank those on this thread for sharing their stories. I admit I didn’t want to have those feelings…they were initial feelings, not where I end up when I am not having that gut reaction. But at the same time, high fiving when a person knows my struggles and talking about labeling when someone can choose to use other language does not sit well with me. So, yes, I need to work on my issues, I should not assume that people are thinking XYX, AND other people should be more sensitive to the struggles of those on the lower functioning side of the spectrum. That was my main point of the post.

  7. Julie says:

    I am the mom of an Aspie, I wouldn’t trade her for the world. My experience with the whole label thing came when a coworker heard me talking about going to get our long awaited diagnosis after years of waiting to get into someplace that would take our insurance. She said to me ” Are you really sure you want your child labled for life?” I have to admit that it threw me that someone would even ask that! I told her ” Of course I do- all you have to do is meet my child to know she is different. I want her to have a chance at getting the best services available so she can grow up to be a functional adult.”
    I have also had others who think if I just disciplined my child better she wouldn’t act so strange. I guess they never heard of least restrictive environment. She can’t help the way she acts, she can’t just stop in the middle of a full blown tantrum, she just is who she is.
    I wish others could see her as the amazing beautiful person that I do. And I wish others could gain the acceptance to realize that Autism is not a death sentence, just another condition…

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