ASDs parenting ASD kids
I was going to do a rant, but got interrupted. Luckily, it gave me some time for reflection and I’ve decided to turn away from being a rant. This is a response to Sarah’s New York Times blog reply, Kristina Chew’s Change.org blog, and Sarah’s blog reply to comments made. I feel it’s quite pivotal to read the three of these with comments before reading my reply. Though, I’ve been known to be wrong. Hopefully, it will make sense even if the posts aren’t read.
I think there are distinct differences to the way the many NT parents parent their ASD child(ren). This is not to say ASD parents are perfect. Hardly so.. but I think our own lives and what most consider “success” means we understand how difficult it can be for our kids.
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I’m going to go a little into my backstory as I think it’s pertenant. I grew up in a dysfunctional household. My mother, whom I believe to be AS-like if not AS, was the primary caretaker to myself, my sister (NT) and my brother (undiagnosed Autistic). She was married to my father who was an alcoholic. (I say was because my father passed two years ago, not because they got a divorce.) With my Asperger’s and my father, my anxiety went through the roof at a young age. I do not remember the better part of my childhood as a consequence. (The history for my diagnosis was based on information from my mother and what little I remember.)
I scheduled every part of my life as well as my brother’s. I stayed busy because I enjoyed it. I didn’t notice a lot of my quirks (though, now I recognize just how different I was) because I didn’t have enough time to stop and think about it. My mom also kept me going. I wasn’t allowed to have a job during my high school years (allowed by either my mom or dad) because it would take away from my school. I didn’t get my first job until I was just over 18. I worked at Subway for 3 weeks with the last week being filled by complete physical agony because the stress became too much. I then switched to a much nicer job of tutoring math to people who could easily be my parents by their age. It was quite lovely to be honest.
Then I moved to go to college. And that’s when I fell apart. I didn’t have every second scheduled so I started realizing just how alone and lonely I was. I didn’t quite fit in with most people. I wandered the school grounds for the first couple of months barely knowing anyone. I got lucky to find a group of friends who were sort of like me, some of whom I still have the pleasure to call my friends. (Okay. I lied.. I didn’t find them, they found me.) But still, I couldn’t handle the stress. Not of classes, classes were great. I loved what I was learning. But I couldn’t handle testing. I couldn’t handle paying bills correctly, or managing money. I was majoring in Physics, had a firm understanding of math, but for some reason just never could get myself together enough to do what I needed to. I tried for nearly 2 years to make it work. I did not succeed. I stopped when I got pregnant with my oldest. Not because I got pregnant, but because I finally conceded loss.
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I can see what happened to myself. I know how I could have done things differently and possibly been “more successful” so to speak. (I do plan on finishing a degree. And next time, I will be getting the help I need.) But it also makes me realize what I can do to help my kids. I have enough foresight to see how certain things can set them up for failure.
As parents, we all change how we do things for our children. I don’t care what type of parent you are, or how your child’s brain is wired. We all want to see our kids succeed and be happy. But understanding the difficulties ahead, I feel ASD parents are a little more equipped to help their ASD children.
Just a few examples:
My insistance to keep myself busy all the time set me up for failure. I couldn’t handle it when I had spare time. Life is filled with spare time. It took me several years to figure out what to do with spare time. This seems to be a problem for most ASDs, or so I’m told. “They” tell you to make sure there is little to no down time during your ASD child’s day. I disagree with “them.” I don’t think you need to schedule it in, but I think you should equip your child with ways to cope.
People are known to give their children down to the minute schedules. Daily schedules and present it at the beginning of the day. I tried those for myself. You know what I found? I couldn’t handle anything going wrong. It stressed me out as I didn’t know what to do with my previous plans. I say don’t make those schedules. That is not to say not to have your day totally unstructured, but leave yourself some leeway. But have an order to things. B will happen sometime between A and C. B does not have to happen immediately after A or just before C. Example: We take my husband to work in the morning. Sometimes we take him to actual work, other days we take him to the train station. It happens every day, but not necessarily the same time every morning. After that, we eat breakfast. Now we may eat breakfast as we’re taking him to work, or we’ll eat it on the way home, or sometimes once we get home. It’s still structured, they still know what to expect, but it doesn’t have to happen a set way every day. I also use the same idea with routes travelled. I change which way to get to the same place. This way, if there’s an accident and we can’t use that direction, it doesn’t disrupt the kids whole day.
It’s simple things. So far, my children are progressing wonderfully. I even got a spontaneous, non-prompted sharing of one’s day today. He made an ocean with seashells. It was a beautiful moment especially considering 2 years ago he could barely say 5 words. They are both happy. Yes, they do have their meltdowns. Yes, sometimes they are difficult as all children are. (Have you tried watching an NT child? ACK!) But if we can just step inside their shoes, we can hopefully understand what is provoking that response. Then we can help them. And we also are rewarded by having a happy child which means our own stress is relieved.
For quite some time I have been concerned about how to better help parents. So many of the parents having great difficulty with parenting ASD kids seem to be clueless not-yet-diagnosed Aspies themselves. I run across many of these in my profession and elsewhere in the community, as well as at autism conferences – such as where the ostensibly NT mother sitting next to me ranting about her obstinate young adult Aspie daughter (whom she said was refusing what was good for her) failed miserably at the theory of mind test the presenter informally gave the attendees as an object lesson. I bit more diagnosis could only help the situation. I’m not so sure about the value of “undiagnosing” someone because they have been able to hold on to a spouse and kids.
I was a seven-time grandmother, and my father a great grandfather several times over before we got our respective diagnoses. What a revelation to be able to deconstruct our turbulent backgrounds in the light of neurological differences! I can finally appreciate the many very wonderful things my very Aspie dad brought to my life, and forgive him for all his frustrations and setbacks and temper tantrums when the six of us behaved as children sometimes do. Now I see my NT mother as nearly a saint do a fabulous job raising 5 Aspie kids and only one NT (who eventually became her best friend for life). Every one of my siblings is a productive, effective member of society, and is raising or has raised nothing but productive responsible children. While there is no proof, and this is clearly subjective, it would appear to this writer that the NT parents and in-laws in my family are the ones whose parenting styles, values and influences seem to have resulted in a couple of kids getting involved in a wee bit of “trouble,” but nothing too serious.
Personally, while my professional life has its hazards and ups and downs, and my family life has been anything but smooth sailing (being on my third marriage), I can say nothing but great things about how my five children, including the three Aspies, have turned out. My eldest is a near-Aspie, competent professional, good provider, stable husband and appears to be the best father anyone could ask for. My Aspie daughter is a highly nurturing, intensely interested at-home mother of her three youngsters. They have been good workers, responsible team-members, and have coped with their differences in their own unique ways. The three who are married appear to have very strong marriages, each still married to their first spouse. My most affected child will be quite late to launch, as was one of my brothers, but I have no doubt that he will eventually have all the tools he needs to have to make it on his own, and even with a family of his own some day.
I believe that my parenting through the 1970’s, 1980’s and 1990’s was highly Aspie, quite unconventional, but highly effective. I stressed independence, skills, self-confidence and intellectual growth rather than empathy and connection. This seems to have worked well enough, although doing it over again with what I know now (have a minor daughter and stepson still at home) I am able to consciously add in the balance that was missing in the past. Some parts I simply did not have enough awareness of, and other parts I knew were expected, but I was a rebellious young soul and had no respect for social conventions, even as a mother.
So I taught them to question everything. How amazing is that, that every one of them are now all quite conventional in regards to things like education, church participation, and political persuasion? All they had to do was rebel against Mom!
Kari