Katie’s Chronicles: Interview with Jack

The following post is the fist of a series of reflections and interview responses given by successful young adults with varying disabilities who have direct experience with the Connecticut Special Education system. Our interviewer and writer is Katie Feinstein, daughter of Attorney Feinstein, who is also a successful young adult living with disabilities. Katie chronicles individuals respective journeys within the system and beyond, into their adult lives. The Feinstein Education Law Group represented some of these young adults when they were students. Katie asks individuals to discuss their struggles, triumphs and perspectives as they consider their pasts and move forward into futures of hope and evolving independence. Her first interview is with Jack, a 22 year old young man. Thank you Katie and Jack for your contribution to our community!
———I am a 22-year-old man with Autism who works full time, manages my own finances, drives, is active in my local community, and has a growing social network. My journey to get here, though, has been long and hard. I have had experiences that are very different from many of my peers.My challenges first began to become evident when I was two years old and the adults in my world were concerned that I was not speaking. By age two and a half, I was receiving Birth to Three services including OT, PT, and speech therapy. By age four, I was in psychotherapy. By age six, I was on medication. By ten, I had my first psychiatric hospitalization. By thirteen, I had spent nearly a year in a psychiatric hospital and was on my way to residential treatment where I stayed for the next three years. You get the picture! Experts had told my mother that I would never be able to take care of myself and would need lifelong therapeutic supports. For years I was obnoxious, hated myself, was often out of control, suicidal, unpredictable and many times, I was very difficult to love and tolerate. The world seemed strange and confusing, and most of the time I did not feel like I was like other people. I had no friends and did not know how to be a good friend. Most people saw me as annoying, a punk, and a bad kid. I became a bully as a way of getting my anger out.I probably have had every therapeutic service and intervention available other than brain surgery and exorcism.It is getting easier to publicly acknowledge and understand my diagnosis of Autism. The more I learn about the spectrum, the more I believe that it accurately describes me. But for years I carried a number of other diagnoses including ADHD, Depression, Anxiety, Mood Disorder, Oppositional Defiant Disorder, and the one I laugh at the most – being the Product of a Single Mother who had bad parenting skills. Unfortunately it was not until I was twelve that I was given the Autism diagnosis and the correct treatment was begun.I have worked very hard to get to where I am today. Yet I continue to struggle every day. And I believe I have a long way to go! There is not a day that goes by that I do not fear that everything will crash down around me and that I will fail. I am terrified that my mom, who is my primary support system, will die before I am totally independent. I worry that my depression will return. I fear that if I am honest and tell people that I have a developmental disability that they will judge me and limit my options. I am still struggling to put my past behind me with every peer who I meet who knew me when I was in elementary school.To young people who are struggling like I was, I would tell them to never give up and always believe that things can get better. I would encourage them to find something that they are interested in and then pursue that interest. For me it was boy scouts. I started as a tiger scout and worked my way through to Eagle Scout. When I was seven, I attended my first Eagle Scout ceremony, and when it was over I remember telling my Mother, as we were walking out, that I wanted to be an Eagle Scout. Achieving this accomplishment was very difficult and took many folks, but it can be reached.Now, how is it possible for me to make the transition from disaster and dysfunction to stability and hopefulness? GOOD QUESTION. What I am realizing is that it is a process and I am proceeding on my own timeframe. I achieve goals and milestones at my own pace. But there are some lessons learned from my experience that I would like to share with you.The most important thing to remember is that it is not one intervention, technique or program that determines success. It takes a team of folks and a variety of interventions.Family is important but love is not enough. Young people like me need to have people around them who can set good boundaries, insist upon independence, and continue to raise the bar of expectation. Do not allow us to sit at home and let you take care of us. We might fight and use guilt strategies on you on this but please continue to push and insist upon separation and self-direction.Motivation is essential, so you need to find out what motivates a young person. Do not make assumptions that you know what is important to a young person. Take the time to listen to them and constantly identify what they want and why. And always be prepared that those goals, dreams and interests will change.Young people with Autism Spectrum Disorders need to be exposed to as many normalizing activities as possible. Often our behaviors make such participation in such activities difficult. And we often will fight you and resist. Ask my mom and she will tell you about the endless times she had to carry me kicking and screaming out of stores, restaurants, concert halls, and theaters. Do not stop exposing us to things. Encourage, teach, support and even insist upon us engaging in positive social leisure activities. The more opportunities we can have for typical normalizing activities the better. Do not let us sit at home. That is the absolute worst thing that you can do for us!Encourage endless community connections. We need to be part of larger social groups like church families, extended families, community groups and clubs, sporting teams, scouting groups, and civic organizations. Do not believe for a minute that we do not want to have friends or social connections. We do desire friendships and want to be part of social groups.We just do not know how to connect and have had many bad experiences in which we have been rejected and humiliated. So we are reluctant to try again.Teach us self-advocacy skills. We have to learn how to appropriately speak up for ourselves and not be taken advantage of. We do not know how to be assertive and not passive or aggressive.Finally, those of you who love and work with young people like me know that you should never give up hope that we will be successful. It might mean that you need to redefine what successful means. But never stop believing in us and never stop working on us having a voice in our own future and decision-making.