By Brent White
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?
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.
[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].