Before I make some observations of some of the attitudes and thoughts of others on social media, there are a few stories I need to share so you can understand what is motivating me to write this at all. I am a neurotypical mom to fifteen-year-old twins. In kindergarten, our daughter was diagnosed with PDD-NOS-now classified as Autism Spectrum Disorder (ASD). We’re currently waiting on an official autism diagnosis on our son. Both our children would be considered high-functioning autistics, in that how autism affects each of them is less obvious to the neurotypical community. Neither child fits completely fits the stereotypical template of autism, although if you combined their challenges, we’d be pretty close. At no point did I seek to lay blame or look for a “cure” for autism. Nor do I consider myself an “autism warrior” or any similar title. I am just a mom whose children happen to deal with autism challenges.
When the twins were about seven months old, some neighbors came to our door. You know the ones-hoping to save our souls with their religion. They were very nice ladies, but I had no interest in their religion. When I mentioned to some friends later that I wasn’t sure what to do, they laughed at me. “You’re an air traffic controller and union activist. You can’t tell me you had a problem telling them where to go.” That wasn’t my issue at all. The whole time the ladies were at my door, all I could think was “What behavior(s) do I want to model for my children? Friendly neighbor? Standing up for myself? Both? Something else?” My children weren’t even old enough to be more than peripherally aware of what was happening, let alone old enough to remember the incident, but even in that situation, I wondered what was the best thing for my children.
I have never recorded my daughter during one of her meltdowns. It never occurred to me to do so as my focus was always on calming her, but I still wouldn’t have regardless. When I wrote my book, Outside Looking In, to promote autism understanding, I had my children read the first draft to ensure I didn’t have anything in there that might upset them to have out there publicly so I could take it out of the book.
The day I received two drafts of the cover of Outside Looking In, I showed my son and told him which one I instructed the designer to go forward with and change colors, etc. He was silent in that way that let me know that he wanted to say something, but didn’t know how to say it. Later, he asked if I’d showed his sister yet. I showed her and she wanted the other cover. When I explained that the cover didn’t say “autism” in any way, she told me that she didn’t like the gray and white puzzle pieces. She explained that a lot of people with autism didn’t like the puzzle pieces symbolism and those people wanted the rainbow infinity symbol instead to indicate autism. This was news to me. Even though I pride myself on keeping up with the latest on autism, I had never heard of this.
I researched and learned more about the autism rights movement. I also discovered that a huge percentage of people I know who are neurotypicals who do have autistic children or work with them also had no idea about the rainbow infinity symbol. I thought about it and realized it was because we aren’t part of the autistic community and chatrooms where it is discussed (or debated). Had my daughter not advocated for herself with me, I would never have known. I explained to my children that most neurotypicals don’t know about the rainbow infinity symbol and those people are the ones that we needed to read the book most, so the puzzle pieces had to stay in for them. However, if you look at my book cover, you will see that my children and I compromised by adding the rainbow infinity symbol more prominently in the cover.
What do I hope these stories reflect? Yes, I love my children and care deeply how my actions and choices impact them. Just as importantly, I also respect my children and their beliefs. And that we are able to find ways that meet all our needs in our family by communicating honestly with each other and compromising when necessary.
I know that many of #AllAutistics are adults who grew up in a time when doctors told your parents to consider institutionalizing you, that you wouldn’t have a “normal” life and possibly subjected to you to traumatizing “treatments.” That lack of autism understanding made your lives much more difficult. I feel for you and I applaud your efforts at advocacy to ensure other people with ASD aren’t subjected to what you went (are going) through.
Which brings me to social media and the online community. I have seen some wonderful advocacy by autistics in promoting understanding. Many of those individuals have positively impacted my thinking and choices for my children over the years and continue to do so. I don’t necessarily agree with everything presented, but I do agree with a lot of it. Because I agree that everyone is an individual and has different needs and abilities and should be respected as such.
I have also seen some advocacy that is narrow-minded and harmful to the cause of autism understanding. Advocacy that ignores low-functioning autistics-those with severe or profound autism challenges. Advocacy that only autistic people should be developing research studies. There are a lot of different minds, neurotypical and neurodiverse, who bring varied experiences and thoughts to the table and we should be taking advantage of all of them. Advocacy that ignores the fact that some autistics do like the autism puzzle pieces, while others do not. So-called advocacy saying some people aren’t autistic because they don’t fit your version of autism.
I’ve heard some say that the rigidity of thought exhibited by the narrow-minded/harmful category of advocacy is due to autism itself. I’m not so sure about that. It may exacerbate the problem some, but everyone is different, neurotypical or autistic, and rigidity of thought isn’t unique to autism. Just look at politics right now in the United States for numerous examples.
I’m calling out that narrow-minded/harmful category of advocacy for a few reasons. One, it is harmful to the cause of autism understanding/acceptance/awareness. Two, proponents in this category of advocacy are bordering on the same type of ignorance that they have been advocating against. And, three, my children are normal-developing teenagers. They are looking for their tribes outside of our family, maturing into their future adult selves. Peers and role models are important in shaping their beliefs and identities at this time in their lives. I am ecstatic if they chose autistic individuals who advocate not only for themselves but others in a caring compassionate way, regardless of how their brains work. I am not so happy if they chose autistic individuals that lead them down a path of ignorance and hatred of anyone who is different from them, even if it is a temporary state of affairs. That is contrary to all the values my husband and I have attempted to instill in them. I can only hope that our early teachings and influence give them enough of a solid foundation to recognize the difference when it’s presented to them and that they make good choices.
#AllAutistics, you are the role models for the next generation of autistics. You can choose to be examples like Martin Luther King, Jr., John Lewis, Rosa Parks or Ruth Bader Ginsburg. Or you can be like Huey P. Newton, Eldredge Cleaver or Phyllis Schlafly. Or somewhere in between. Are you for #AllAutistics or just your chosen few? I ask that you think about what your true goals are and if you are really acting in the best interests of those goals.
Your experiences influence and shape what is important to you, but they do not have to define you, any more than autism does. I am not saying that to negate your pride in your autism. I am saying it because it is true. We are each a sum of many parts. I am more than neurotypical or a mom or a wife or heterosexual or ethnicity or career, etc. As are you. As are other #AllAutistics. If you are not kind to each other, it makes it difficult for others to understand how to be kind to #AllAutistics. I ask that you lead by positive example.
A copy of this post also appears on my author website.
In my book, Outside Looking In, I suggested that executive function difficulties for people with Autism Spectrum Disorder (ASD) may not originate in the brain at birth, but might instead be created by toxic stress syndrome as a result of chronic sensory overload in the earliest years of life. With cyberlearning at home for my teenage twins, one who was diagnosed with PDD-NOS in kindergarten and the other whom we are waiting for his diagnosis now, I’ve had more time to observe their behaviors as it pertains executive function skills.
Unlike the spring when all of us were thrown into an unplanned transition, we had the summer to prepare for cyberlearning as well as take note of what did not work during the spring. Schedules in the spring did not succeed in our household, not even a little bit. I noted that asking for help (self-advocacy) and distractions (thanks a lot, Discord!) were the biggest deterrents to keeping on track with schoolwork. You can read more about that here and here. Our children have had months to “reset” their bodies, relax and destress.
The only occasions where one of the children have gotten distracted during “school” in the past couple weeks has been when he/she needed help and was not sure how to ask for it. In fact, the first time it happened, I thought my daughter was upset because she had allowed herself to become distracted and it took me a little time to determine why her reaction seemed out of sync with what I would have expected in a similar situation. Once I realized where the real problem was originating (an assignment that was too broad in scope and unclear in the directions), we were able to address the issue and continue without any further distress on her part. She told me she didn’t use the Help poster because she had more than one issue going on for the same situation. She seemed happier when I told her she could pick just one or use additional post-it notes with arrows or simply draw/write what the problem was.
And our son, whose difficulties in asking for help with schoolwork was one of the reasons we chose to have him evaluated at this time, did ask for help with an assignment. He needed the theory of mind portion explained to him before he could successfully complete the work.
But otherwise, the schedule works. The kids are controlling their own breaks and getting the work done without any prompts from me. Since they have been doing so well, I’ve added a daily chore list to foster more executive function as well as life skills. Our son, unprompted, chose to clean his room, then put a load of wash in the laundry last night-asking for help (again!), on how to start the washing machine.
Where am I going with these stories? Bear with me a little longer, please.
When a child is born, we don’t teach him/her the mechanics of how to use senses. In the case of touch, the mechanics of how the skin relays that information to the brain is not taught by anyone. We teach how to interpret (hot/cold, soft/rough) what is relayed, but not how it gets to the brain. The child does that instinctively.
In the case of sight, we don’t teach a child how to see. Again, the child does this instinctively. If his/her eyesight needs improvement, the child develops workarounds without knowing that is what’s happening. He/she may move closer or farther from an item or squint. If they receive corrective lenses, we can then potentially train those instinctual pathways and muscles in a different manner, but the initial mechanics of sight and perception and how they get to the brain are beyond our control.
I’m assuming that a child is born with its senses, in a manner of speaking, wide open to the world. In a neurotypical child, he/she instinctively learns to filter all the incoming sensory data down to a level that makes that data comprehensible and useful to him/her. So what if autism is simply that initial stage of filtering the subconscious sensory data for the conscious mind? That stage where we don’t know how to teach a child how to filter effectively? When they are older, we can help them learn to manage the effects better, but the actual pathways have been formed by instinct during a time when we have no way to know or teach any differently. And during that initial stage, a child instinctively attempts to shut down the limbic system to control the sensory data versus filtering/ignoring the data. What if that is what autism truly is? And everything else is just a symptom/byproduct of autism?
Think about it.
Because a child doesn’t filter the incoming sensory data, that child is now instinctively shutting down the limbic system to control the input where facial expressions are interpreted creating difficulties with social awareness and cues. Difficulties interpreting social cues and behaviors creates an emotional/sensory limbic reaction to keep an individual safe, which leads to a sensory dislike of crowds and unpredictable social interactions. Inability to filter the incoming sensory data effectively leads to chronic sensory overload.
Chronic sensory overload creates stress. Some of the cognitive, emotional, and physical symptoms of stress include racing thoughts, constant worrying, disorganization, feeling overwhelmed, difficulty quieting your mind, low self-esteem, headaches, chest pain, and insomnia-many of which autistic people experience regularly. Chronic stress creates toxic stress syndrome. Toxic stress syndrome creates executive function difficulties and sometimes lowered feelings of self-worth.
In essence, it looks like what most of what is currently considered autism may not be what autism actually is, but its end results and the only way to determine if autism is the root issue. Just like obesity, high blood pressure, type 2 diabetes and high cholesterol can result from insulin resistance. The effects are different for each person, depending on the amount of data filtering in the case of autism or organ glucose handling in the case of insulin resistance.
What to do with this potential “aha” moment? I have absolutely no idea beyond understanding autism and its effects a little better and reframing the issue a little. I wouldn’t know how to teach a child to filter subconscious data for the conscious mind since I have no clue how my mind (or any other mind) does it or even if it can be taught.
In the meantime, though, I am going to enjoy the fact that without the social sensory stressors of school involved, my children are making some progress on executive function skills. And maybe, just maybe, I can find ways to help them reduce their stress now that will work in the future for them to keep their stress levels lower in a neurotypical environment when things go back to “normal” in the world.
A copy of this post also appears on my author website.
I’ve been posting some quotes on social media from my book, Outside Looking In, and it occurred to me that I haven’t been sharing them here. So it’s time to rectify that oversight!
Our school district decided to begin this school year with a hybrid schedule, 2 days/week and every other Monday in-person learning, while the remaining days would be remote learning. For those families like ours who are uncomfortable with any in-person learning during the pandemic, the only option made available to us was cyberlearning. If a student has an Individualized Educational Plan (IEP) or 504 plan, that student could attend full-time.
The main difference between remote learning and cyberlearning is the amount of teacher interaction/support given to the students at home. While I, along with others, were very vocal about the fact that we preferred an all remote learning option to cyberlearning, we were not successful in our efforts.
For cyberlearning, there is supposed to be a teacher assigned to each course who is available for student questions and to grade subjective assignments, like essays. For my kids, beginning tenth grade, most of the teachers are still listed as TBD (to be determined). K-6 (which was new to our district for cyberlearning), though, has a team of teachers and from what I’ve seen and know of the educators involved, those students will probably receive a combination of cyberlearning and remote learning. Which is good for them; those children will be getting a more rounded experience during these uncertain times.
During the continuity of learning phase at the end of the last school year, it was painful for all of us. See my previous post from my author website about that. Part of me has been dreading a repeat during this school year. We set up a “cyberlearning” corner in our living room and the children are using district-issued devices instead of their personal laptops. I’ve let the children know that school rules regarding internet usage, etc. apply while they are on those devices and the district can track everything they do and where they visit online. A major issue this past spring was that all the distractions were right there on their laptops. I set up a schedule for each, letting them sleep in a little longer to account for their teenage circadian rhythms. I’ve attempted to alternate course difficulty with short breaks after the more difficult courses. We did revise the schedule so that physical education was last; the kids seem to prefer it. I had requested that someone at the high school send me an audio file of the class change bell so that I could use it at home, but my request seems to have slipped through the cracks…multiple times.
They are allowed to use their cell phones and personal laptops during breaks. The only caveat is that if they are not on target and passing all their courses, those break times get shortened and they lose the cell phone and laptop usage. If they finish the day’s assignment in a course early, they have the option of taking a break or working ahead in that course or another. For the most part, they have been taking breaks. They are allowed to get snacks/drinks and walk/stretch whenever they feel the need.
Our daughter has autism, and we’ve begun an evaluation to have our son evaluated for the same (you can read about why in my book!). Both have been in general education classrooms since kindergarten, our daughter with additional support. I have requested that there be a daily check-in via virtual means with someone at the school (support teacher, paraprofessional, whomever) so that there is accountability to someone other than mom. I’m waiting for that to get set up. Both children have used this particular cyberlearning platform a couple years ago for some electives, so they are familiar with it.
We’re in the first half hour of Day 3 and what a difference from the spring! With the exception of some minor distress on my daughter’s part before we started on Day 1 (transition that she wasn’t comfortable with), it has gone extremely well. The schedules are working (fist pump!), the kids are on target and passing. But even better is that they are utilizing executive function skills without any prompts from me. If they finish a course early, they are taking a break, but then starting pretty close to on-time for the next course without me saying a word. Even with adding a half hour of physical activity at the end of their schedules for their physical education course, they’re still finishing their school day before they would have been coming home on the bus normally…and no homework (so far, anyway!).
I’ve told the kids that we’ll be tracking how often they need help, either from me or a teacher for the purposes of IEPs and self-advocacy. Obviously, I’ll know when they need help from me, but I let kids know that it was important to know how often they were requesting help from a teacher on their own without my assistance, so that they could see they were making progress advocating for themselves.
While I wish there were more social interaction, even virtually, for them, so my daughter could progress (she may be regressing some) in that competency, I think the lack of social interaction is keeping her stress levels down and allowing her to progress on her executive function and self-advocacy skills a little faster and easier. And as much as I would have liked the remote learning option for the social interaction, the platform that is being used for that by our district requires a lot more clicking back and forth between courses/assignments and it is much harder to keep track of it all, for the kids and me. With the cyberlearning platform, it’s all right there in one spot…and the daily updates to me on where they are is much easier to follow.
So, for now anyway, cyberlearning is the safest and least stressful option for our family. I’ve already had discussions with our children about how well it is going and that when they start college and get jobs, they may want to consider having a device solely for those purposes to reduce the chances of distractions. Interestingly, both children think it is a really good idea and hopefully, it has given them a good option for the future to help them cope as adults.
I’m so excited that Outside Looking In is now available at most retailers online now! Links can be found at my author website, vivianlumbard.com.
It’s been receiving some wonderful reviews. If you get your own copy, I hope you enjoy it, too, and spread the word!
It now feels real; I have books I can hold in my hand!
The official release date is mid-September and if you sign up for my newsletter at vivianlumbard.com, you will be entered to win a free autographed copy of the book. I’ll be selecting one winner each month, September through December, for the remainder of 2020.
What do you think? I like the cover a lot!
The official release date is September 15, 2020. Thanks to all my advance readers! I sincerely appreciate all your input.
Outside Looking In will be available for pre-order soon. I’ll be sure to let you know when and where you can get your own copy. You can sign up for my newsletter at vivianlumbard.com.
Be sure to like my Facebook page; I plan on sharing information pertaining to autism, etc., not just updates about the book.
It’s really happening! I’m publishing my first book. Happy, happy (stim) dance!
I admit it is easy to armchair quarterback, but given the school year approaching, concerns about how/when/if to reopen the schools and a lot of the comments I’m hearing, both privately and publicly, a lightbulb went off in my head and I thought I’d share.
First, I am not blaming our school board or district for not implementing something similar to my lightbulb moment before now. I consider myself a fairly bright person who has concerns beyond that of my role of parent and I just thought of it, so I can’t judge others for not thinking of it before me. 🙂
Second, each of us has concerns that are unique to our roles in the schools, be it parent, student, teacher, staff, PTA/PTSA, administration or school board. Even within those roles, there are subsections: for example, teachers – you have general education, special education, grade level, subject, etc. And some of those roles overlap, parent/teacher, etc.
Third, I’m hearing complaints about the surveys themselves, forgetting to put something in a survey response, lack of participation in the surveys, lack of stakeholder input before now, how the people for the individual focus groups were chosen, people in the focus groups may not have felt that there was enough time to address all the concerns, etc.
So what if? What if the district had crowdsourced online? What if all the stakeholders had had access to the same information in one spot and could express all their concerns, research and brainstorming in one place as they thought of them? It could have been similar to a message board or wikispaces environment. One area specifically for research, reports, mandatory state/federal requirements. Other areas for specifics concerns: health/safety, transportation, staffing, supplies, remote learning, even links to articles about what other districts are doing or have experienced, etc. Subsections could be added as needed for parents/teachers/staff, etc.
From all of that, coming in from anyone in the district, lists could have been started with goals that needed to be addressed. Absolute requirements: federal/state requirements. In-person learning considerations beyond curriculum: social, emotional, etc. Remote learning considerations beyond ensuring students have technology and access. People submitting their various ideas on how they think it’s best to go forth with others helping to flesh it out or debunk it (in a respectful manner) from their perspective using the same research as everyone else. Did we consider this? Is this something that will work for this group of students/teachers, etc.? Is it workable? Can we modify it to better suit the majority of concerns? Should we pursue a waiver for this? Can we afford it? How will it impact instructional time? How will it impact parents? How will it impact students? How do our in-progress plans look with this new research that just came out? And so on.
And wouldn’t the end result have been better? More people who felt heard and involved from the beginning who understand what the considerations for *all* the groups are more likely to feel that the final plan is better for all, not just their own group.
Unfortunately, I can’t see our district doing something like this, even if we had more time available to get it done. But what if?