I’ve always been afraid I would have a damaged kid. Down Syndrome, specifically. Although as I grew older and new diagnoses were being made, autism replaced Down Syndrome as my number one fear for my unborn children. Ironically, as soon as my daughter was born, I was remarkably unconcerned with that particular issue. I’m guessing the distraction of sleepless nights, the nightmare that was breastfeeding and just the general overwhelming existence that comes with being a first-time mom didn’t allow me time to indulge my life-long fear. I didn’t even stop to question her vaccine schedule. It never occurred to me to worry about that particular risk. Now that she’s 2.5 I’m thinking we’re out of the woods, even though other people certainly have been diagnosed well past the danger zone. Namely, my mom.
Except my mother hasn’t been officially diagnosed yet, and I don’t think she’s interested in going to a specialist and discussing her “quirks.” She is very interested in the articles I send along, most recently, this one in New York mag. The Autism Rights Movement by Andrew Solomon discussed the desire and organized crusade among members of the high-functioning autistic and Asperger’s society to be left alone. Not fixed, not medicated. Simply left alone.
My own mother lives in the middle of nowhere. Literally, the middle of nowhere. Our family talks a lot about when she’s going to need to move to civilization. My stepfather died ten years ago and she’s been out there in the middle of nowhere alone since then, but she insists she likes it. It wasn’t until I read The Autism Rights Movement that I really got it. She does like it out there. She likes being sheltered from social interaction. She never understood the point of social events and small talk. I thought she was over intellectualizing when she would come visit me in New York and not make conversation at dinner parties with my fabulous friends. They were artsy, in the theater and enjoyed well-dressed tables and soft cheeses. I thought she was silently judging the silliness of it all, and of my new life. Now I know she just had no idea what to do or what to say. Food is another thing she just doesn’t understand. Why would you spend upwards of $25 on an entrée? Who cares? Although she does love her chocolate turtles. She has always had a sweet tooth, but no taste for fine dining.
Many people described in the article fit my mom to a tee. And she was even more convinced after reading the article that she has her own special place on the spectrum. A big part of me wants to send her to a place that specializes in this kind of thing. An adult autism specialist. Is there one? And as I’ve wondered aloud before, is there any good reason she should be checked out? It certainly would fulfill my curiosity, but would it be helpful to her in her life? I’ve been putting off the search because I don’t want to turn my mom into my own personal research project. But I suppose it’s too late for that. After all, I’m blogging about it. I’m not using my mom’s name because she doesn’t know I’m using a public forum to discuss her newfound "situation." And I don’t think people in her neck of the woods would be searching the interweb for this particular topic either.
So I’m torn. I’m torn about writing about my mother, whom I love and respect, and about digging into this newfound knowledge. These realizations have already answered so many questions, namely the reason I always worried about having a child with a developmental disorder and why she has been consistently “rude” to my friends through the decades. This idea that she has been judging me through her lack of enthusiasm about so many of my life choices is suddenly debunked. She just doesn’t understand why an ideal birthday present for me is a massage and pedicure since she hates to be touched. She sends books instead. Which, admittedly, also rank pretty high on the birthday present list. But it felt pointed. I'm understanding now that it wasn't. Her lack of appreciation of my favorite New York restaurants sounded like this: “Stop wasting your time and money dining on elaborate dishes and pithy conversation. Go home and read some Dickens.” Granted she never actually said that - out loud anyway. But now I can see that she wasn’t judging, she just didn’t get it. But I’m starting to.
My Autistic Mother: Realizations Sans Therapy
- by , on Fri Jul 11, 2008 11:23am PDT
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Comments 1-10 of 10
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Posted by Fri Jul 11, 2008 3:22pm PDT
Report AbuseWith all due respect, I have to say I couldn't get past your first sentence. "...a damaged kid." I have a child with Down Syndrome and I find that choice of words very offensive. People with disorders are not 'damaged' simply different. Please be more aware of your choice of words. Thank you.
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Posted by Fri Jul 11, 2008 3:29pm PDT
Report AbuseNo offense, hun, but this sounds like it's all about you and your wants, not what makes your mom comfortable and satisfied with her life. She doesn't need to be "fixed" or be "perfect" according to your terms. So what if she gives you a less-than-absolutely perfect birthday gift. Be grateful for the unique person she is and ask yourself what blessings and lessons you've gained from knowing her -- as she is!
As the mate of an adult Asperger's person (I refuse to say "sufferer"), I can speak with authority on this one. My mate fits the description of your mom, and is a delightful, intellectual, and curmugeony witty misanthrope who I wouldn't trade for the world. I myself am also not perfect and I like it that way just fine.
Open up your eyes to a bigger world and you'll be amazed how interesting it is.
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Posted by Sat Jul 12, 2008 9:13am PDT
Report AbuseAs a mother of an autistic child who will be 5 in August I too don't consider him "damaged" goods. He is an expressive, charming and funny boy whom we would not trade for the world! We have accepted his difference and hope others will do the same.
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Posted by Sat Jul 12, 2008 9:43am PDT
Report AbuseHello gladto say I found the stories very interestingand concernable about caring for loveones.
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Posted by Sat Jul 12, 2008 6:52pm PDT
Report Abuse'Damaged'? wow, thats cruel. Toys and cars can become damaged, but not people!
Anyway, i agree with what everyone else had to say, be thankful she is your mother! Your an adult now, so go and get your own massages and pedicures.
I also have to say that with the given data that is avalible to the world now, that I might also fall under the spectrum. I never feel judged by people, and I dont think you should judge your mother!
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Posted by Sat Jul 12, 2008 6:52pm PDT
Report Abuse'Damaged'? wow, thats cruel. Toys and cars can become damaged, but not people!
Anyway, i agree with what everyone else had to say, be thankful she is your mother! Your an adult now, so go and get your own massages and pedicures.
I also have to say that with the given data that is avalible to the world now, that I might also fall under the spectrum. I never feel judged by people, and I dont think you should judge your mother!
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Posted by Sat Jul 12, 2008 8:57pm PDT
Report AbuseI always look at the new fad diagnosis with skepticisim since I suspect the ones without biological markers are often overblown so that certain members of society continue to be employed. Many of these people who are being thrown under a label, to me, often just seem to have a type of personality and way of interacting that would not fit under Myers Briggs extrovert category. Many of these people are probably just introverts who are often unpracticed at reading and using social ques. I would not expect someone who is not a gymnist to be able to do a back flip well, if at all. I would not expect someone who does not like school to go to college and perform well. Why does everything that does not fit nicely into someone's picture of the ideal person have to have a label as if something is wrong with differences.
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Posted by Sun Jul 13, 2008 2:53am PDT
Report Abusemy question is who is not "damaged"....mostly people who society labels. why can't we all just be people.
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Posted by Sun Jul 13, 2008 7:14am PDT
Report AbuseI get what you're saying. Yuor choice of words may less than desireable but by the middle of your posting it sounds like you've finally started to get that while your mom seemed not to approve it was just that she has her own comfort zone that your hurt feelings keep getting in the way of seeing clearly. I think everybody at some point in their life has been guilty of the same. Sometimes you are just so close to a situation that what others outside of it see clearly you aren't able to. My little brother was diagnosed with paranoid schizophrenia at 18 and we were really thrown by it. It got really bad before we finally realized he had something going on that needed a professional diagnosis. Looking back after that there were definitely signs that we thought was him joking or just being anti-social and felt like we really let him down.I'm glad your mother has has a good life filled with children and marriage and all the things that bring personal happiness and peace, including her own place to live that she obviously enjoys Because my brother will probably never have any of that. He lives with my parents and they provide an excellent life for him where as other people can't handle it and put their loved ones in a mental ward with all kinds of disabilities and no specialization. It was horrible seeing these places and one guy we know of who has the same thing his father makes him sleep in a tent because he can't deal with the personality quirks and habit that comes with it.My parents make sure he's treated and taking his meds and makes a home condusive to his wants and needs and happiness but they can't change the fact that all his brothers and sisters are married and have children and he wants so badly to share his life with someone and wants children but the reality is this may never happen. He will never have the piece of mind your mother does just tortured by things we cannot fight for him nor even come close to really understanding. My husband and I have 2 daughters and this is now our very real fear for them and their children and we wanted more children but will not because of the possibility of this. My parent live with the fear of what will happen when they aren't here not because as a family we won't be here but because it's such a difficult condition for the person and the family. So don't feel bad about the past with your mother or her diagnosis just move forward and thank God everyday for being able to move forward.
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Posted by Sun Jul 13, 2008 4:21pm PDT
Report AbuseI understood exactly what you meant. Even people who love their "Special needs" children would have prefered that they did not have those challenges.
If your mother is indeed autistic, she is an example of how hopeful a parent can now be. Now there are so many organizations and behavioral techniques to help people cope in the "normal" world. It is not how it used to be when retarded children, children with Down syndrome and the autistic were put away and basically left to die.(get to know the history people, "damaged" is gentle compared to what was said and done to this population)
Your ability to articulate shows why this community can now exercise their right to reproduce instead of thr forced sterilizations that were once prevelant.
Please continue to get to know your mother and understand why she prefers to be alone.
There was a wonderful film by a child with autism called
"Why Normal People scare me" (I am not exactly sure of the title) It shows how higher functioning autistic people view the world.
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