Inclusion Doesn’t Mean That We Become So Invisible That You Don’t Ever Need to Think About Us.

April 15, 2015 3 Comments

Our adult transition and adult day programs are both community-based. Our participants and teaching staff constantly bump up against the negative stereotypes and everyday ableism that many community members harbor towards intellectually/developmentally disabled individuals. For example, two incidents occurred last week. In one, a community member came to my office to express concern that one our adult participants was “allowed” to independently take a dance class without direct supervision from her staff. The staff, who were in fact, waiting respectfully right outside of the dance class. Two other teaching staff members were yelled at by an AC Transit bus driver for “allowing” participants to ask the bus driver to lower the wheelchair/accessibility ramp and to tell the driver where they were going. My teaching staff does a remarkable job of remaining calm when they are confronted by community members, but often those community members are handed my business card and asked to call me directly.

I know I am supposed to be diplomatic and I try, but I see, hear, and feel the same ableist nonsense every day. It is hard to encounter the same misconceptions over and over again. So, I thought I would give the community some tips on how to deal with situations they don’t understand:

  1. Slow down, listen, and be patient. This will go a long way toward helping you understand what someone is trying to communicate with you. The guideline we use in our programs is: when you ask someone a question or make a request, wait as long as you possibly can for a response. Then wait a little longer. Intellectually/developmentally disabled individuals process information differently and it may take us a little longer to respond. There is nothing wrong with this.
  2. Our participants are adults. They deserve the same respect as any other adult. Intellectually/developmentally disabled individuals have been historically infantilized- framed as children no matter their age. This is unbelievably disrespectful. You should stop this.
  3. If you have a question about one of our participants, ask them. Don’t ask their teaching staff. It is disrespectful to the participants and the staff is just going to refer you back to the participants anyway.
  4. Presume competence. This one is easy! Presume that each individual has strengths and the capacity to learn and grow. Of course it might mean that you need to rid your mind of the negative stereotypes about intellectually/developmentally disabled individuals you have come to accept as truth, BUT it will free your mind. I promise.
  5. It’s OK to be different. Remember just because someone doesn’t do something in the manner or the order in which you do it, doesn’t mean that they are doing something wrong.
  6. Communication isn’t just the use of words. Communication is deep and complex. Words are limiting, but watch someone communicate with their environment by using their body, or flapping their hands or arms. Listen to the language of stimming- it is often more beautiful than words.
  7. We all have the right to fail. Our program believes in the dignity of failure. This is how we all learn! One of the biggest burdens the special education system places on our backs is that everyone is afraid to let us fail. Failure, dealing with failure, overcoming failure makes us stronger. It makes us adults.
  8. We all have the right to take risks. We learn by doing, by making mistakes, by struggling and finally figuring it out in our own way. I’m not talking about dangerous risks, I’m talking about the risks it takes every day to be a human in the world: to ask for a job; to ask someone to be your friend, to ask for a kiss.
  9. Trust in the power of struggling. The world for intellectually/developmentally disabled individuals is more often than not, chaotic. It may not appear that way to you, but it is to us. We learn to adapt and the ways in which we adapt are pretty amazing. The way we measure success is by how well someone adapts as opposed to how well they can pass for neurotypical.
  10. We become self–determined, empowered individuals when we are provided spaces to try and succeed. This cannot be accomplished by being shuttered away in some classroom or some other incarnation of an institution. We need to be in the community, working on skills hands-on, and in real-time. And just to note, this is not accomplished by herding large groups of disabled people around in vans under the ever watchful eyes of hovering staff.
  11. The community belongs to us just as much as it belongs to you. I know this is hard to understand, but just take a deep breath and accept it. We have every right to be as deeply included in the community as anyone else. When we talk about inclusion we are not talking about passing as neurotypical. Inclusion doesn’t mean that we are invisible to you and you never have to think about our lives, our history or your part in continuing to pathologize, devalue, infantilize, and isolate our lives.

When you think one of our staff isn’t supervising, you are incorrect. We believe that our participants are all adults learning how to adapt and be in the community to best of each individual’s ability. We give participants respect; we do not hover, restrict, constrain, shame, or in any way coerce participants. We support through mindfulness, acceptance, empathy and presuming competence. We believe that inclusion is an equal partnership.

And if all of this seems too difficult, then try being kind instead of patronizing, this is always a good place to start.

Sincerely,

Brent

 

acceptance-revised

 

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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Autism is Family: A Guest Post by Sonia Boué

January 7, 2015 2 Comments

I began to write this blog early this morning; by the afternoon it appeared that I might be psychic. One Dr Manuel Casanova, neurologist and US university professor had taken to cyberspace with some pretty toxic yet surprisingly disjointed views on what he considered to be the blight of the neurodiversity movement [[you can read the post here, but Trigger Warning for its ableist language]. It’s distressing, but the only thing to do is blog back with a firm rejoinder on the joys and benefits of neurological variation and the importance of what autistic adult self-advocates do best – giving a window into an important cultural and perceptual difference within the human population.

One of the most striking features I’ve found amongst this marvellous online community of adult bloggers is the urgent desire to communicate about what autism can be. It’s a top class ‘world service’ in my view, which reaches out to it’s own as a support network but also seeks to educate what has come to be called the neurotypical (NT) world – if only it had better ears and eyes sometimes. Blogging has emerged, particularly strongly in the US, and partly in response to heinous misrepresentations of autism by the major US ‘charitable’ player for autism, Autism Speaks (A$), whose negative rhetoric includes a recent comparison of autism with leprosy. Nice!

It is also fostered by a pressing need for understanding in general, and the right sort of compassion, which isn’t steeped in ignorance or pity-based, but works rather on the basis of equality through a respect for neurological difference.  What autism means can be different in each case – although there are common threads – and so I’ve found it’s helpful to engage in total blog immersion, and allow the myriad perspectives to filter through over time. It’s been almost four years since I began this process, spurred by the need to understand family.

So what have I learned?  Well, it’s been quite a revolution because I began at the wrong end of the stick. Through a systematic barrage of misinformation largely filtered through medical models of autism, I truly thought it was a baffling condition visited on the family through a combination of ‘bad’ genes and ‘bad’ luck. It shames me to say that I really did think my job was to help ‘afflicted’ family become as ‘normal’ as possible and ‘fit in’; a task I was mercifully unqualified for, being far from ‘normal’ myself. Menaced by the mantra of ‘early intervention’ and the language of ‘rescue’ versus ‘regression’ we agonised over, but happy failed to implement, a bewildering array of possible ‘cures’. The point is that autism was a negative in our lives and much grief spent over a losing battle to conform. I’m still so very angry about this hi-jacking of a relationship over many formative years in which autism felt like a chasm I could never bridge.

What I’ve learned from all these luminous (and freely given) blog gems, is that autism is so very human. Of course it is, it always was. Autism is not ‘other’, and autism is not what most people think it is. For me, autism is family, and my autistic friends have shown me that autism could perhaps be me. Wired differently too, I share many autistic traits but don’t struggle with social pragmatics. For me (forgive me if your view differs) the inability to process social pragmatics ultimately forms the outstanding feature of my loved one’s particular diagnosis. This specific learning disability (SpLD – current terminology in UK ) feels entirely parallel but rests in a different area of cognitive function from my own neurological disability, in which number, system and pattern don’t register. Both have sensory processing and co-ordination issues at core, and so I use my own neurological difference to create a force field of empathy and many compass points of comparison with my autistic family. It’s a privilege to be so close to autism, and to move between neurologies revelling in the beauty of difference. In sharing so much, my blogging friends have not only helped me understand my loved one, but also to understand myself; a fellow ‘square peg’ as one friend in particular puts it.

None of this detracts from the true challenges within autism and disability (using a social model) in the present. Also there are many co-existing conditions such as epilepsy, which create suffering for autistic people, but self-advocates point out that they don’t suffer from autism itself – this is an important point never taken up by the likes of Dr Casanova and A$. They seem to miss that a cultural definition of autism – albeit with a neurological basis – is being employed; autism here is identity and community. Autism is family. From this perspective, A$ and the rhetoric of ‘cure’ is entirely oppressive. Family is family and spectrum is spectrum. Dr Casanova’s fantasy of an elite intent on superiority is based on poor homework. Read the blogs Dr C.

What’s needed is a focus on the benefits of difference, and a true assimilation of the way in which assumptions about the superiority of neurological ‘normalcy’ (if it truly exists) limit us all. The good doctor holds disappointing views for a neurologist, which is too bad as he has the power to influence opinion.  It’s vital, in my view, to follow the lead of autistic self-advocates in insisting on detail and diversity within the autistic spectrum and avoid too much generalisation, which leads to sloppy assumptions and unfortunate stereotyping. Keeping to the particular safeguards against such unhelpful tendencies, and was one of the original reasons for beginning a blog post today, to share something I found significant, and to contribute; to give back. Because that, Dr Casanova, is what we do. And the following breakthrough moment, has nothing to do with cure, but everything to do with enabling, and empowerment. It’s also about ‘rescue’ in the form of paying to attention to detail and asking the right questions. No relationship to rescue in bio-medical terms.

For some time now my family member has wanted more social contact. But the question has been how to break into the bewildering social whirl outside the school gates? It requires complex pragmatics to navigate the volume and speed of NT communication and find out what the options for joining in might be. This is hefty processing. So imagine, in addition, the confusion arising from ‘hidden assumption’. In this case that everyone knows how NTs gather the relevant social information. You see Dr Casanova, autism can mean not knowing that NTs use questions to achieve connection. Autism can mean not knowing that NTs use them like phone book or a tv listing – just to find stuff out. And autism can mean you experience questions as something quite different. In this case as statements of intent.

I found out about this exact difference of perception only through a very recent social mishap. New Year’s Eve saw another occasion of failed expectation and social imprecision. I’ve spent such a very long time misunderstanding the refusal to use questions to make more effective social arrangements – not even by SMS. I thought processing issues might be at the heart of things every time the grind of mashed gears and a blank expression told me my words weren’t working. I knew to back off. Oh, I get it now, but only because I finally asked the right questions never imaging where they might lead us. That’s how hard it can be, Dr Casanova,  it can take years of mashed gears even with people who have love and patience in their hearts. But at last I know that asking a simple question feels as dangerous as peeling off your skin and showing everyone your acute need for companionship and belonging; how risky and exposing, especially if you don’t have a secure friendship with the other person to fall back on. It’s just what a young person needs when exposure anxiety is also in the picture. No wonder fear has always won out and caused such a roadblock.

At the moment of realisation all the years of thinking helpful hints just couldn’t be processed, flashed before me. I saw the tension leave my loved one’s body. How liberating it must be to begin to understand that simple questions don’t necessarily expose you to others. What fathomless depths to be managed every day when you don’t have a social compass. No-one should ever wonder why fear is so present in autism, nor diminish it. Spectrum is spectrum.

So we need to counter the ignorance of those like Dr Casanova who should know better and care more about detail. I’ve yet to read a blog claiming that autistics are superior to NTs (but I see the inverse implied every day and everywhere). Respect and equality will do. Thank you.

Sonia Boué is a visual artist based in the UK. Using discarded objects and materials, she fashions new narratives referencing domestic interiors and childhood games. Her work is research based weaving together history and autobiography. Barcelona in Bag is a current and ongoing project about exile following the Spanish Civil War. It is in development as an online museum.

“I am more interested in building a community of friends around a piece of work than numbers.”

Sonia has created and currently hosts The Museum for Object Research at http://www.a-n.co.uk

 

Sonia Boué, Arena y Mar (Sand and Sea), detail, mixed media on canvas, 2014.

Sonia Boué, Arena y Mar (Sand and Sea), detail, mixed media on canvas, 2014.

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Adult Autism and Program Leadership: Yes, It’s a Big Deal.

June 5, 2014 9 Comments

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

The dust has begun to settle a little bit from a recent incident at an IEP meeting where a student’s family member attacked my ability to direct the ACAT transition program based on my autism. This is the original post and a fantastic response from Sonia Boué. My executive director, board of directors and the school district officials have treated this incident with the seriousness it deserves and I am going to trust the process for now as it moves toward a resolution.

A person involved recently told me that they had noticed how “comfortable” I seemed discussing my autism with the families of students, but they had not understood why it was a “big deal” until this incident. I appreciated these comments because they seem to hint at a recognition of the complexity of the very personal and delicate decision to disclose. But there is more to it than just that, and yes, it is a “big deal”.

I try hard to appear comfortable when I discuss my neurology openly with strangers. Appearing comfortable is practiced. Publicly disclosing either my autism or dyslexia always feels scary. It is not comfortable for me unless I am discussing it with other neurodiverse people. It is however extremely important for me to openly discuss it. It is a big deal that there are too few neurodiverse people in leadership positions in special education and there are far too many people who call themselves “experts” speaking about our neurology, which they clearly know little about. I’ve sat through too many IEP meetings listening to these “experts” get it insultingly wrong.

The day after the family member attacked me; I turned on the evening news and saw mass murderer, Elliot Rodger described first and foremost as having “Suffered from Asperger’s”. This of course is the prevailing view of intellectual and developmental disability in our society; burdensome, tragic, even dangerous. These views negatively affect each and every program participant we are meant to serve. Our ableist society fails to honestly understand neurological differences or to presume our competence. And it fails to acknowledge the existence of the negative neuro-normative constructs which permeate our special education system or how damaging and unsafe those constructs are. For me, being open about my neurology means speaking up to counter the overwhelming amount of misinformation which exists about our neurodiversity; even though that leaves me personally vulnerable.

I believe many special education professionals and caregivers have a firm intellectual and empathetic understanding of neurodiverse experiences. However my understanding is actual and visceral. My experience is lived, constant and valuable. The education and provider systems tend to focus on deficits and can overlook, or fail to even understand in the first place, the incredible ways in which neurodiverse individuals adapt to living in an often unfriendly neurotypical world. As much as anything, my role as an openly neurodiverse program director is to bear witness to astonishing ways our program participants adapt, grow and succeed;  and to bear witness as well to the struggles and pure originality to each individual life; this recognition is indeed a big deal at the deepest, living and breathing level of every neurodiverse individual.

Autism and my specific neurological wiring shapes and colors my life experiences. Growing up and living in a neuro-normative world has often been isolating and traumatic; my difference has been shamed. But it is just these kinds experiences which connect me to our program participants in a profound, intuitive and meaningful way. These experiences are the force which drives me to create programs which honor and respect the unique lives and voices of intellectually and developmentally disabled adults. And yes, this is for me, for us, a very big deal.

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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“I Heard a Rumor That You Have Asperger’s. Are You Even Capable of Running This Program?” An Encounter with Ableism.

May 23, 2014 26 Comments

I’m not naive. I understand the personal risk that comes from being open about my autism. I thought about it for a long time before I decided to make my diagnoses public. I understand that being openly autistic makes me vulnerable to ignorance and even cruelty.

I direct an Adult Transition Program called ACAT, which I designed, and an Adult Day Program called ACT. I have worked with transition age intellectually and developmentally disabled adults for over 10 years. I am all too familiar with negative attitudes society holds toward our population; our capabilities are undervalued; our voices are ignored and dismissed; our lives are viewed as burdensome and tragic. I choose to be open about my autism, to be an advocate, because I believe that it is absolutely essential for me to challenge these negative attitudes which are not only wrong, but harmful as well.

Apparently not everyone got the word. Yesterday at an IEP meeting, the sister of one of our students was ranting on about her displeasure with the program. She leaned across the table, raised her voice to me and spat out “I heard rumors that you have Asperger’s; are you even capable of running this program!?” I was outraged. Then she repeated, “I heard rumors that you have Asperger’s!” Anger rushed through me and my access to words locked up. I think I told her that it was none of her business and if she insisted along this line, the IEP meeting was over. My staff, Eric worked to diffuse and redirect the conversation. I was grateful for him. I know he was angry too. The rest of the table said nothing. Maybe they were stunned that a family member of an intellectually disabled young man would question my capability based on my disability. Maybe they were filled with shame. Maybe they were indifferent. I don’t know. I do know I felt unsafe.

As I walked home later that evening with thousands of thoughts and emotion racing around my head, something occurred to me; something important. It is easy and justifiable to focus anger on the ignorance of the family member and her nakedly cruel ableist words. Not only is her brother disabled, but she also works as a special education speech specialist. I have a profound sense of disgust for her. But I thought of the others at the table, all neurotypical and their collective silence.

Being open and public about your neurodiversity takes courage and certainly more courage then the others at the IEP table showed. I’m reminded how “experts” try to speak for us all the time, but when it come time for them to stand up for us, they fall silent. If my capabilities had been questioned because of my gender or my sexuality would there still be silence?

The best part of being an Autistic Advocate is presenting the positive side of neurodiversity, but there is another side to this as well, a scary side, which must be acknowledged. So as my hurt and anger slowly dissipate, I publicly wear my wounds. I don’t want people to speak for me, but I wonder, when this happens next time to any of us, who will stand up.

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[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

 

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Autism, Bullying and the Need for Safe Space: My Interview with Jonathan about his experiences in the special education system.

April 21, 2014 2 Comments

By Brent White

4/22/2014

Jonathan is a 19 year old participant in Ala Costa Centers’ Adult Community Training [ACT]. A few weeks ago he started talking to his group about some of the difficulties which arose for him after he was diagnosed with autism in the fourth grade; a time when he was taken out of a general education classroom and placed in a special education class. Jonathan remembers suddenly finding himself in a special education system where he encountered disempowerment, otherness and bullying. It is striking to me because of the Jonathan I have come to know who is sharp, good natured and warm. He is an emerging leader; a self-advocate with a growing interest in disability rights. I’ve seen his self-confidence grow in the short time he has participated in the ACT program, which seems in such a sharp contrast to what he describes in our interview. I have a keen interest in Jonathan’s experience because I am the director of his adult program and because I am myself autistic. 

[This is Jonathan’s story told with his permission and in his voice]: 

Brent: How old were you when you were diagnosed with autism?

Jonathan: Actually I think it was in 4th grade when I was diagnosed. In fifth grade I was moved into a different [special education] class.

Brent: Do you know why the school system asked for a diagnosis? 

Jonathan: My teachers noticed a problem with my speech, not turning in assignments, and I caused issues on the play yard.

Brent: Before you were diagnosed, did you feel like you were different from other kids your age at school?

Jonathan: Before I got diagnosed, I felt like I was exactly the same; a normal person trying to live my life and get through class, but also I remember a year or two later I developed a tick. I felt I was accepted; I had friends, and then things changed.

Brent: Did you get to sit down at a table and have a meeting with teachers before they placed you in special education classroom?

Jonathan: Yes at school, in front of my mom, in a closed off room.

Brent: What was said at your meeting?

Jonathan: “Jonathan you are a great guy; you try your best, but we are going to put you in a different class to try to make it comfortable for you and to place you with other people like you.”

Brent: What did you think about teachers telling you that they were going to place you in a different class?

Jonathan: I was young and I just said yes. That’s when things started happening and I didn’t have a choice. I got picked on and bullied. I was in the singled out group vs. the whole school. And it didn’t feel great.

Brent: Did bullying start immediately?

Jonathan: Yes, all different forms of it, but around one main point – “You’re disabled”; “You suck”; “You’re the R word”. All of it! One guy says “Hey fatso,” and eventually everyone follows. It leveled out in middle school and I remember I got picked on a lot less when I joined sports teams.

Brent: Were 6th or 7th grade easier for you?

Jonathan: 6th grade was okay, but 7th, I really struggled. In junior high I went to a private school for students with disabilities for the 6th-12th grades.

Brent: Why did you go into a private school?

Jonathan: They said that it was better for me and I would excel and I would do better with people with similar needs as me. 

Brent: Why was the 7th grade so bad?

Jonathan: 7th grade was a nightmare. The teacher was completely new and didn’t know what they were doing.

Brent: Did the bullying increase? 

Jonathan: Well my behavior increased, because I was not myself. I was seeking negative attention and getting myself into trouble.  It felt like a prison, everyone that got in wanted out. We all purposefully tried to get in trouble and run out.

Brent: Did you talk to your parents about this and say “hey I’m miserable and this is like a prison”?

Jonathan: I told them and they said it’s just a few more years and you’ll be done.

Brent: You stayed until you were how old?

Jonathan: I think 15.

Brent: Then from 15 you went to….?

Jonathan: 10th-12th grades I went to one school. The academics were much harder and there was a basketball team and football team.

Brent: Did you join the basketball and football teams?

Jonathan: Yes, and that’s where I bumped into someone I knew from the other school.

Brent: So you made a friend!?

Jonathan: Yes, he had the same diagnosis as me and we were best buds.

Brent: Did you have friends or best friends before 4th grade?

Jonathan: Well that’s where it gets really tricky. I don’t remember having good friends before 3rd grade. I definitely remember the enemies.

Brent: So you had no friends between the 4th through the 10th grades?

Jonathan: Yeah.

Brent: One more question; it’s abstract

Jonathan: About art?

Brent: No about you. So if you, the Jonathan today could go back in time and talk to the Jonathan in the 4th grade who is about to go into the special education system, what would you say? What advice would you give?

Jonathan: It’s actually pretty hard. I could start off by saying to myself, “Stay away from bullies and work harder than you’ve worked before; hang low and try to stay under the radar.” I could say; “Try not to attract attention to myself.” It always finds you again, just like that new kid feeling. The question is really hard and I don’t know how to answer. 

Brent: How would you make your 4th grade-self feel better?

Jonathan: Maybe standing up for myself and say. “You know what? I’m not having this.” And I wouldn’t care about being a teacher’s pet if it got me away from bullies. Maybe standing up to parents and letting them know that I’m really not comfortable here and I want to get out of here.

Brent: How is Jonathan today, the Jonathan who is out of high school? You’ve moved and started a new life here in the East Bay.

Jonathan: That Jonathan is going through a lot of transitions.  I do say that is part of me. Besides transition, I’m learning how to be independent and I’m learning skills like cooking. Before the ACT program, I didn’t know anything about cooking. But now I’m much more open and I feel like with this problem, I’m challenging myself more to do better and think better. And make smarter decisions that could have pros and cons either way.

Brent: Your experience was traumatizing. But do you feel like you’re optimistic now?

Jonathan: I’m confident. I’ve learned more skills that will allow me to deal with bullying compared to my 4th grade self. I can’t say I’ll never be bullied or picked on.

Brent: Sounds like something we should work on together.

Jonathan: Right now I’m happy. The worst part of it all was being singled out and not having a choice and they kept telling me that I had a disability and learning issues, but for all that they never gave me any history about that .

Brent: I’m so sorry you ever had to go through that. Do you feel positive about being autistic now?

Jonathan: I’m comfortable with it. I’m learning to handle it better and like I said, making better choices and learning new things. I’m actually kind of happy I’m autistic because it helps me see the world differently and also understand my past, because there is a lot to learn about myself. Autism is part of me and I’m not going to let anything stop me from living my life. 

Brent: That is a really beautiful thing to say Jonathan. Thank you so much for sharing your story and putting up with all of me questions.

Jonathan’s story is compelling and it points out the struggles many young people have within a special education system which can be stigmatizing, disempowering and even unsafe. I find Jonathan’s resilience remarkable. I think it would be easy for him to blame his troubles on autism and for it to become a negative focus in his life. This as much as anything speaks volumes about the strength of Jonathan’s character and his ability to overcome and to move forward.

Jonathan’s story illustrates another important issue; the need for safe spaces. Creating safe spaces should be the foundation that any program which serves the needs of developmentally/intellectually disabled folks is built on. Safe space means physical and emotional safety.  It is a non-judgmental space where differences are celebrated and never shamed; a place to truly be yourself. It allows room to take risks, fail, and learn from those experiences; a place where it is ok to make mistakes; a place where everyone is heard and respected. Jonathan’s story is an example of why this is essential. 

I’m happy that Jonathan chose the ACT program and that I’ve had a chance to meet this terrific young man. From the ground up both the ACAT and ACT programs have been designed as safe spaces. Hopefully this is a place where Jonathan can find support, encouragement and the respect he deserves. 

Jonathan at the Ed Roberts Campus

Jonathan at the Ed Roberts Campus

Jonathan patiently allowing me to take his picture.

Jonathan patiently allowing me to take his picture.

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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“He is sitting in a Chair” A Description of Friendship – Expressions of PosAutivity: #AutismPositivity2014

March 26, 2014 6 Comments

I observed an interesting encounter yesterday between ACAT/ACT teachers and our participant Rafael. Rafael and his group were working with a relationship curriculum and discussing friendships. The teachers ask Rafael who his friends were. He thought about it for a while and said that Ihe was his friend. Rafael and Ihe have been forming a lovely bond over the last few months. The teachers next ask Rafael why Ihe was his friend. This question took longer to answer, but after careful thought, Rafael said, “He is sitting in a chair.” It is easy to take Rafael’s answer literally; Ihe was sitting next to him at the time, but I understood the intention differently. Their friendship is expressed by proximity, but not by words. They choose to sit together all the time on BART, at lunch or when working in groups as they were yesterday.

It got me thinking about how important it is for me when someone chooses to sit next to me in social situations. Like many autistic folks, social pragmatics are an issue for me. It isn’t that I don’t want to be friendly or meet new people, nor is it simply an issue with shyness or awkwardness. The issue for me is walking up to someone [stranger or not] and striking up a conversation makes no sense. I have no access to how it works. I know intellectually how conversation, particularly small talk should work, but I cannot conceptualize the process in in my mind. It is blank. Add to this, difficulties with understanding spoken language or understanding the flow and mechanics of conversation in general. Social situations, especially as gateways to forming friendships are most often frustrating and stressful.

This is life-long for me, from my childhood until now at age 55; it has never changed. While I’ve learned adaptations along the way, the nuts and bolts of social interactions have remained just out of my reach, a confounding mystery. It can be lonely and isolating watching social interaction happening all around me and feeling shut out, not because I’m not invited, but because I can’t internally access it, at least not on my own. This is why someone choosing to sit next to me and attempting to strike up a conversation is so important. It doesn’t always work, but it works sometimes. Someone taking the time and looking past my conversational awkwardness can be a blessing. While I don’t have many friends, my friendships have often started when someone chose to sit next to me.

When Rafael said of Ihe’s friendship, “He is sitting in a chair”, I heard something beautiful and profound. I heard that Ihe is kind and sweet and takes the time to sit with Rafael. I heard that Ihe is willing to bridge whatever conversational gap might exist, and importantly, that friendships can exist on a non-verbal level and succeed. In fact their connection runs both ways, as Rafael also chooses to sit with Ihe as well. The friendship between Ihe and Rafael is forged through the presence of the other and language is not necessary. “He is sitting in a chair” as a description of why someone is a friend, is a deep and endearing answer. For me, it is one of the most interesting and understandable I have ever heard.

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Rafael and Ihe riding the BART train together.

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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