Forcing Friendships Doesn't Equal Autistic Youth Gaining Social Skills

My son's first friendships were with family. Image of a hug between Mu and
his adult big sister. His back is to the camera. His sister is smiling.
Posted with the permission of the subjects. Image by their father, Nuri Cevik.

"How do I handle my child seeing the children of every new family who moves into the neighborhood surrounding us included in outdoor play knowing he is being excluded from the group?"

I saw another parent posting this question as one of the most frequent questions autism parents ask as their kids become preteens and teenagers and I cringed a bit. It is a common concern for all families with autistic youth trying to navigate a world where they are often othered and mistreated. My son and I also see them when we hang out on our deck or the backyard in the summer or on snow days. Kids his age, teenagers, will for the most part either ignore him, ridicule him, or ask to do his respite care to fulfill their community service requirement at school. They never ask him what he wants.

That last bit is particularly anger-inducing. Asking for my son as if you are doing me the favor of walking the family dog is dehumanizing to my son in a dismissive way that reeks of ableism on steroids. These are not the kinds of interactions that will help him build the self-confidence he will need to navigate this world after his father and I are gone. He needs to understand that random people may be ableist and some people are dangerous. He needs to know that some will offer friendship as a ruse to some other end.  He must be given the chance to interact enough to grasp the differences between true friendship and all other types of approaches.

My son is not just Autistic. He is the son of a Black woman. Survival social skill building is a requirement of being Black in America. Like code-switching to gain access to better education and employment opportunities, knowing who hates you and what that looks like can keep you alive. In approaching/considering my son’s interactions with others, my racial and ethnic experiences inform my stance on his human rights.

Parts of my childhood were spent in areas where my siblings and I were the only African American children in predominantly white neighborhoods and schools. We were in North Carolina in 1972, where "This is Klan Country" billboards appeared on highways in several parts of the state. We never lived or went to school with the expectation of friendship. We were taught to survive the environments, which were for the most part hostile to us.

My mother was an educator. Her parenting flaws were legion but she had a tendency to rise like a phoenix in times of adversity. When I came home at age twelve with a bruise on my cheek asking what an n-word was, she pulled out an unabridged dictionary and had me look it up. Then she told me in terms that I could understand what this slur was meant to do and why it was untrue. We discussed how I would handle my bullies. She warned that even those in authority might hold biases and turn away while I was being beaten and how to reduce situations ripe for being dragged off and beaten up at school in the future.

My mother said something to me back then that was life-changing. She said people were not required to like me or befriend me. They were required to respect my right to exist, to move in the same space, and to be treated equally under the law.

That is what I want my son to learn. I want him to know, as an Autistic person, that he can choose to befriend someone or not. An autistic young person has the right to have an active and willing agency in the process of deciding who to befriend, what boundaries should be set on such friendships and who they are just not comfortable with. Before any of that can happen, they must understand not to comply with every demand made to them from everyone. They need to understand they have a right to say no to people. And they need to know what kinds of behaviors are abusive and wrong.

But I don't see this happening with parents. The focus is on finding friends, even finding dates when children become teens and adults,  without assessment or understanding of their children’s needs, wants, or ability to protect themselves from harm. This goes hand in hand with the belief that friendship by any means necessary with "normal" teens will "rub off." As long as parents force friendships their autistic kids will someday go to sleep at night and wake up magically typical in the morning. Any sign of intolerance from their autistic offspring for whatever the parent views as ideal social interactions with peers is then a behavioral challenge needing to be imposed not only on the disabled child but on peers in the neighborhood. This escalates to pleas to communities to create normalizing events by inducing pity for the autistic child or young adult to elicit a response from the schools, friends, or neighbors.

I hope I never embarrass my son by blasting a social media demand that someone come and befriend him without his consent. He played with other children on playgrounds until he didn't wish to go to them anymore. The noise of a gaggle of young folk filling a sidewalk and refusing to yield to his wheelchair is not particularly pleasant for him. If the nondisabled peers who are his neighbors don't even have the courtesy to yield when needed unless he glares at them, how can I as a parent demand that those same teens befriend him?

Contrary to assertions that these forced experiences are a necessary part of the social skills process, the aggressive demand of parents that other teens interact or befriend their autistic teen can backfire by being offputting. Negative responses from teens cliques/groups parents wish their autistic teen was part of are NOT teachable moments. My view is that my son is a human being, not a social science project. He doesn't exist to teach his nondisabled peers tolerance.

Two cautionary tales of autistic teens irrevocably harmed by the mistaken parental idea that somehow they had neighborhood friends are the cases of the autistic teen boy in Ohio who was assaulted by five teen males with bodily fluids during a faked ice bucket challenge, and the case of an autistic teen boy who was systematically tortured during snow days and holidays by two teen girls. In both cases, parents spoke of insisting their teens leave with their abusers, even when they showed reluctance to do so.

The parents spoke of being relieved their offspring had made friends with typical neighborhood peers. They had no idea their children were being victimized by their "friends." The need for the parents to want their children to have friends in order to make parents feel better overrode possible red flags about these relationships they might have spotted immediately otherwise.

In contrast, every person who has genuinely befriended my son has come directly to him, not me, and extended their hand or signed to him or asked him if he would like to sit with them. They made it clear to my son that they wanted his friendship and their intent was transparent. And yes, they knew he was a nonverbal autistic. They only asked how he communicated, respected boundaries, and made an effort to find activities that allowed him to see us and understand he could return to us anytime he wished.

My point is simple. We parents shouldn't push friendships on our autistic children because we think they need to have them to reach a goal of being indistinguishable from their typical peers. We shouldn’t presume their incompetence at acquiring friends or berate them for not having any or enough friends. We should not create or force participation in events requiring typical partners and then send social media lamentation that our kid is autistic and has no friends when things don't go well. What parents do by this behavior is to broadcast across a global platform that they have a vulnerable disabled person who is friendless. They broadcast that they are willing to force their autistic loved one to comply with anyone who presents themselves as a potential friend to them. This destroys our young people’s self-worth, reinforces the belief that they must comply with everyone’s demands, and leaves them with a sense of helplessness and lack of agency in their own lives.

Look at what your autistic offspring like, what they want and how they navigate the world first. Consider what would work for them. Then sit with them and however they communicate with you, explain consent and boundaries. Only when parents are certain their autistic teens want friendship facilitation and understand boundaries and consent should friendship facilitation happen with the active agency of the autistic teen. Otherwise, this is about us, not them.

P.S. Friendship facilitation does not mean broadcasting your teen's lack of friends online or trying to gaslight other teens into taking them to events like homecoming dances, proms, or birthday parties. It means looking for meetups and events that will be accessible to your autistic teen, asking them if they want to participate, and allowing them to leave if and when they wish.

This could save our children from irreparable trauma.

Peace

Forced Migrations

Highway sign white letters on green field read You are now leaving
Greenbelt with yellow warning sign in yellow with black font
reading Exit Only

I thought I would be fighting the good fight until my autistic son was in an inclusive classroom. I thought I would be in historic Greenbelt, speaking out at the city council meetings, pushing for a better west Greenbelt community. We entertained the possibility of a move to the beautiful new town homes they were building  between the metro station and College Park. Nothing turned out as expected.

 2014 has been a year of failures and disappointments for me. I am exhausted. While efforts to improve a neighborhood on the verge of urban decay for a very long time have seen changes like new management, renovations and better maintenance,  the largest garden style community on the East Coast  is still the rough part of town. The retirees who raised their children there were forced out by 2012. Between 2007 and 2010. crime peaked and a series of fires caused by a combination of faulty wiring and arson burned out legacy residents. Stability has returned but it had come at great cost. My idea of building community ties there just wasn't going to work. Too many residents see west Greenbelt  as a hotel/transient lodging rather than a legitimate part of greater Greenbelt.

Mu with big sister at Greenbelt's Mother and Child Statue

The brand new wheelchair accessible middle school was not where they wanted our son to go. Four years of homeschooling later, no administrative attitudes had changed and the goal was simply to warehouse another nonspeaking autistic student. How would this one be made compliant? What was the risk to everyone else of any given placement? This was the only thing discussed. Under a veneer of feigned interest in our son's individual support needs, the only plan was segregating him away in a closed classroom environment and getting us under the yoke of special education hopelessness as quietly as possible. In the public school administration's view, autism parents, like nonspeaking students, should be compliant.

We are residents of Montgomery County now. I have very mixed emotions about moving. It was something I urged other parents in our former county not to do. At the time I truly believed that someone had to stay and fight for change. But things had reached a critical mass, and my husband realized, as many special needs families do, that migration towards better services is the only way to improve the quality of our children's lives.

Starting over sucks. There is no other way to put this. Moving with a neurodivergent young man is

Art Deco Styled Community Center, Greenbelt 

very stressful. You just don't know how he might react to leaving an area he's known since babyhood. He loved the Art Deco of the historic Greenbelt buildings, the throwback Mayberry RFD feel of the close knit small town in the middle of the beltway rush. It was always like stepping back in time in a good way. The Mother and Child Statue was his favorite place. And he loved the library and the the park in front of it.  I miss things about Greenbelt that are hard to explain if you haven't been there.  The Greenbelt Co-op supermarket and New Deal Cafe are among them.

Mu and I haven't adjusted to the new neighborhood yet. We are strangers in a strange land. So I guess the historic Greenbelt nostalgia comes in part from that. But I'm also confronting a painful reality. Like increasing numbers of autism families we had to try and find some place where his needs would be met without the mountain of negative challenges constantly facing us in our old county. I miss Greenbelt, the New Deal town. I miss the light of understanding of where we were headed dawning on Mu quickly by the familiar turns in the road and the pedestrian crossings to buses,  the old town, the park or mall. I don't miss many more things however. I won't miss the obstinate need to retaliate for our speaking out to help our son, the ableism, in short the autism wars for inclusion. I won't miss the disparity in health care and education given him. I won't miss the presumption of incompetence that seemed standard fare for anyone considered  a foreign or non white parent.

Sign for New Deal Cafe , GreenBelt, MD 

I am taking each day as it comes. We are having a quiet holiday weekend with a convalescent Mu. The new home and neighborhood are lovely. Mu is transitioning well. We are working our way back to routines and the comforting patterns of everyday living.  The sadness of leaving a place I thought we would surely retire in will, in time, dissipate. Our family has become another data bit in the statistic of migrating families trying to make life better for their disabled children. Wish us luck.

More on Greenbelt can be found here

Not Like My Child: Parenting and Low Incidence Differences

I just read an article on a Facebook community page by an autism mom that was meant to be a heartwarming narrative of her autistic son, who is my son's age. She said he was special, but not. She goes on to proudly describe how he successfully navigates a social event and concludes by making it clear he is just like his siblings but he tells her not to be concerned that he is an intersected autistic preteen. He assures her he will be fine. Throughout the narrative, there is the mention of her son's race, and that his race will present challenges when he is an adult, just as it does for other Black males. She makes certain to emphasize he has worked his way to full inclusion, an opportunity to blend in with a "normal" school population.

The author describes her son with pride. Based on her descriptions in the article, her son seems to wear a function label (I intensely dislike function labels but need to use them here to make a point) that is implied as being "high". His label is autism, but the supports and services needed are considerably different than 13% of his autistic peers who are nonspeaking and have health and educational challenges in addition to different neurologies that prevent them from "passing".

Autism is described as a "low incidence" disability along with  blindness, low vision, deafness, hard-of-hearing, deaf-blindness, significant developmental delay, complex health issues, serious physical impairment, multiple disability. In addition, per the National Center on Accessible Instructional Materials , it should be noted that:

None of the disabilities listed under low-incidence disabilities generally exceed 1% of the school-aged population at any given time. The relative rarity of students with these disabilities in public schools often poses significant challenges for local schools struggling to meet their needs. Since they encounter these students so infrequently, most local schools have little if any knowledge of how to best educate these students, of what technologies are available to assist them, and of how to obtain needed and appropriate support services from outside agencies. All students with low-incidence disabilities thus experience a commonality: they are difficult to serve in current local public school programs.

I don't blog about high incidence disability. The author of the FB article's son, while falling into the same diagnostic and racial category as mine, is "not like my child." Yes I finally had to go there. My son carries additional labels that place him in a group that is rarer and has a  need for more comprehensive educational supports, accommodations and services. Although both boys are the same age and race, and carry the same label of autism, the expression of autism in my son is clearly not as it is expressed in her son. Thus the trope that frustrated parents who react to reading the prominently placed posts of those authors who wish to brag about the accomplishments of their assimilating children  just came from my mouth. This is something I've tried to avoid for the entirety of my blogging history.

I went there to make the point that there are pitfalls  to narratives from mothers about their children that they have a perfect right to produce and publish, but which tend to overwhelm the autism conversation at the expense of families and people who have low incidence disability profiles and are told they cannot set full inclusion as a goal despite the intensive supports that the IDEA is supposed to provide. Students who must not only fight for inclusion and respect among their peers in age, but must meet ableism head on because they can't make themselves invisibly average in a classroom.

Students like my son.

I once tried blogging in response to the plethora of blog posts about the lives of autistic children and  preteens who use verbal speech, but whose parents insist on speaking for them rather than having them speak for themselves. My husband and I used to go to parent support group environments, and parents would beginning immediately comparing their child to ours, undermining our efforts to help our son in order to make themselves feel better about their own children. "At least he isn't like your son" was the most common sentence we heard. True. My son has parents who don't measure him by the yardstick of how "normal" he is or how much he compares to others with similar labels. We measure his success by how far he's come from where he started and how much he is able to do for himself.  I need him to know that he exists beyond constraints that others, regardless of intention, place upon him by such comparisons. So I ceased trying to blog in counterpoint to those themes and just began writing and speaking in support of people like my son.

The idea that a child needs a comprehensive individualized education plan and more support than their peers within the spectrum should not diminish their right to be heard. My interest in the continuing battle the very courageous Henry Frost , who continues to fight to not only be included in his neighborhood school but to make his neighborhood school district a safe one, is the direct result of knowing Henry, who is older than my son, is very much "like my child." Henry's voice needs to be heard again right now, but I truly don't believe anyone is listening.

Henry is a student in a school district that has had three students "like my child" die, two of those students dying in the last year. These students died while in the care of the school system that has fought Henry Frost tooth and nail to resist giving him what the law says he should have. Henry Frost and his family are beyond brave. Read about what is happening to students "like him". It is not a heartwarming tale of hope for invisibility and "passing". It is what Henry is facing down in order to stand up for my son and all those "like him".  Don't know what I am talking about? Here watch this, but I need to warn you it is raw footage of a child dying on a school bus in Henry's school district. Read this, and this.

The narrative on autism  online was so polarized and rigid that I had to search through hundreds of blogs and autism communities before I began to find what I was looking for. People who were autistic adults and "like my son". At the point when I began to correspond with them and autistic professionals who worked with nonspeaking autistics everything improved for our family. If you are one of the many parents who read one of the endless articles out there by proud parents on how well their preteens are assimilating to main stream life, or one of the other articles of depressive despair written by parents of autistic children who have considerable challenges, don't give up. There are other voices out there, Voices that understand you, your loved one, the civil rights you are fighting for, and are with you. Not in despair, not in hubris that diminishes others in order to elevate their own. In solidarity and love. Let me save you some search time. Try the blog We Are Like Your Child by clicking here.

Henry Frost, and all those like him including my son, regardless of whether they are categorized with multiple, complex, low incidence disabilities have a constitutional right to a free and appropriate education with the supports and resources needed to accomplish that goal. All of our children have a right to go to and from school and be safe while they are being educated. This is not about money or the things the schools need to deliver that constitutional promise. It is about the legal obligation public schools funded by our tax dollars have to do so.

It is about inclusion, justice,  and human rights for all members of society. 

Peace.

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For Henry Frost, in solidarity. I will always stand with you.