Showing posts with label agency. Show all posts
Showing posts with label agency. Show all posts

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.]
Kerima Çevik
theautismwars.blogspot.com

"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 non-disabled 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 off-putting. 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 non-disabled 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.

----

A version of this article was previously published at The Autism Wars.
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Why I Hate ABA: A Personal Opinion

Cos Michael
www.autismage.com

Cos Michael | photo courtesy author
[image: Photo of a white British woman with
short-ish curly platinum hair.]
ABA (Applied Behavioural Analysis) as a discipline, requires autistic children to appear as if they are typical children. It doesn't matter how kind and well meaning the teacher, whether they are autistic or not, a loving parent or not—the outcome is that the "successful" autistic child ceases the behaviour that defines them as autistic.

They never stop being autistic.

Once you realise that an autistic child will never stop being autistic, it becomes clear that they are suppressing their natural responses. It is masking, or "camouflaging." Asking a child to mask all of the time causes a build up of stress. Stress is both mentally and physically damaging. When that child grows up, they are likely to exhibit the mental and physical effects of their stress.

Autistic people are not born depressed or anxious—yet most of us acquire these conditions as we grow up. We suffer the physical manifestations of a life of stress; obesity, diabetes, gut problems, heart problems, self harm: the suicide rate of autistic people is nine times that of the general population. Try to link cause and effect.

The other horror of ABA is that, by training the child to obey instructions that run contrary to their instinct, you are, deliberately—for the purpose of ABA, but by default in other areas of their lives—teaching autistic children that they cannot act on instinct, but must obey the nice authority voice. You are raising vulnerable children to be prey to every predator with a nice authority voice. Would you do that to a child of yours? Or trust a clinician or therapist to do it? I don't think so.

That is why this autistic adult hates ABA.

Most autistic children grow up, learning from the world around them, just as other children do. We learn to cope, to trust ourselves and to find a way through. We may need more help in our early years, while we struggle to "learn the world." We may need adjustments for the whole of our lives, for some things, but that's OK—you don't expect blind people to navigate without aids, do you? Adjustments are made for all sorts of disabilities.

Many of us will tell you that a major disabling factor for autistic people is the ignorance or intolerance of others. Communication works both ways, yet it is us who are expected to adjust, all the time.

Environments that suit us will suit others too—autistic people aren't the only ones who find noise, crowds, smells, bright lights, etc; difficult. ABA training to adapt doesn't in any way help us adapt—it forces us not to complain about the routine sensory punishment beatings we take because we are autistic and society is inflexible in its attitude.

ABA does not teach children to be typical. It teaches children to act "normal," all the while inhibiting them from finding their own normal. Rather than training us, we want those who would change us to examine their own motives, because ABA is not beneficial to autistic people. ABA absolves worried parents who live in an intolerant society from having to accept the reality of who we are. And it makes an awfully big profit for those who live off providing it.
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You Are Not Your Child

Sara Luterman
www.NosMag.org

Sara Luterman
[image: Headshot of a smiling white
person with short dark hair & glasses.]
Recently, Amy Lutz, a parent advocate, wrote an opinion piece for Spectrum News titled, Adults with disabilities deserve the right to choose where to live. I wholehearted agree with that sentiment. Unfortunately, the article that follows argues nothing of the kind. It is, in fact, an argument to return people with developmental and intellectual disabilities to institutions. These new institutions have organic-biodynamic farms, swimming pools, and fluffy pillows. They are, however, still secluded and subject to all of the abuses of Willowbrook and Pennhurst.

Amy Lutz and others who mask new institutions as a “choice” do not draw a healthy or appropriate distinction between themselves and their own children. When they say, “adults with disabilities deserve the right to choose,” they mean is that their opinions are their children’s opinions. They do not believe that their children are capable of having opinions about any serious or real issues. They see their children as extensions of themselves, rather than distinct human beings.

This is a struggle many parents face, whether their children are disabled or not. It can be hard to let go. It can be hard to not see your children as extensions of your own hopes, dreams, and aspirations. Unfortunately, for disabled people, it is much easier to justify erasing the healthy line between parent and child, because we are vulnerable. When someone has difficulty communicating, it is much harder to establish healthy boundaries.

If you are a parent of an autistic child and you are reading this, I confess, I am not like your child. While I may have more similarities and shared struggles than you might expect, I do subscribe to Dr. Stephen Shore’s adage: “If you’ve met one person with autism, you’ve met one person with autism.” However, it is even more important to point out that you are not your child. It is one thing to advocate for your child when he or she is unable to advocate, and entirely another when you essentially claim that your opinion is your child’s opinion. It is incredibly disingenuous to claim “adults with disabilities deserve the right to choose where to live,” when actually, what you mean is that you would like to choose for your child to live in an institution, and for Medicaid to pay for it.

People with developmental and intellectual disabilities need help doing things many others can do on their own. Our autonomy is largely at the whims of our parents, teachers, and support staff. This is especially true for people with higher support needs. What that means is that parents, teachers, support staff, and others have a responsibility to work harder to figure out what a developmentally or intellectually disabled person’s opinion actually is. This means creating educational materials to help people make choices. It means some amount of prompting and guidance. Susan Senator’s handmade guide to help her son vote comes readily to mind. The Autistic Self Advocacy Network has been putting out a fabulous series of image-supported, easy-read policy guides on topics ranging from Medicaid to supported decision making and alternatives to guardianship.

My own opposition to institutions is not based in some philosophical ideal about the definition of freedom. Rather, it is because I know older adults who survived institutions. Many parents will rush to point out that I do not have an intellectual disability and do not need very much support to live independently. This is true. I formed my opinion on this topic by listening to people who do have intellectual disabilities and do need significant supports and by learning from them.  People like my colleagues Liz Weintraub or Evan Nodvin and the activists at Self-Advocates Becoming Empowered (SABE) have fought for the right to live normal lives, or at least lives that are as normal as possible, for decades. Listen to them. Listen to your child. Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy. You are not your child.
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