Adults Struggle with Lack of Services – An Asperger’s Job Story
As a child I was diagnosed with infantile autism. I was placed in an institution from the age of 5 to 16 for children with developmental disorders and various degrees of mental retardation. This institution was chosen for me by my parents and medical professionals, as the public school system at that time had no program in place for a child with my challenges. I was the most advanced child in the school and was used as a role model and helper for the staff since at this residential institution the majority of students were down syndrome and mongoloid. Programs for my diagnosis were still being developed as the medical community learned more about autism. After graduating from this institution at 16 I completed public high school and then a bachelor’s degree. The professionals at the time recommended a vocational school for me but I made my own choice to take a different route.
Once I completed college I thought I had overcome all my barriers, but instead I found myself at the start of a 25-year struggle and journey. That journey was a wake-up call for me on the lack of information, support, and understanding for myself, my family, employers, and in many social areas of the needs of adults with Asperger’s. I spent many years in feelings of failure, isolation and frustration.
The first 10 years out of college I could not hold a customer service job for an extended period of time. Every 6 months I was getting fired or laid off and during those years I had 15 different jobs. I ended up in a low paying hotel job for over 11 years. I worked long hours that included every weekend. What sustained me at this job was having a boss that recognized that I could do the job tasks that he could not. My boss had a special needs child and that influenced how he interacted with me at work.
Because my boss appreciated my skills in support of his role he had the power in the organization to advocate for my position when others would question my performance. Once my boss retired I lost his protection I had to leave the job under extreme stress, anxiety and misunderstanding of my work ethic and ability from my new supervisors.
During my years of job changes each time I got laid off I went to professionals for a diagnosis for help and answers on what was happening and how I can make changes to improve my career. In 2005 my therapist encouraged me to undergo a detailed neuropsychological evaluation. I was diagnosed with Pervasive Developmental Disorder, consistent with Asperger’s Syndrome, Non Verbal Disorder. After this diagnosis I felt I finally had an answer to many years of disappointments and frustration. My family was finally relieved that we finally had an answer.
I started to search for rehabilitation for me as an adult. First stop was the Texas Department of Rehabilitation and their assessment of me is that I was too old and if I did get it by now I never would. Due to having a college degree I was denied services for re-training for a new job. I was placed in a social skills class through the agency but they determined I was not suited for the program. Due to years of heavy judgments from employers I decided to apply for social security disability to give me some form of protection from discrimination if I returned to work or to assist in my rehab needs. It took three years to be granted disability with the help of a lawyer.
I was granted disability from some of the side effects of Asperger’s, which for me is anxiety and depression. Once again I started to look at the various rehab programs in the community for rehab for adults. All the programs that are out there today are geared for children or young adults. When I ask do you know of any programs for adults the answer is always I am not aware of.
I began to implement my own program that consisted of engaging the help of various health professionals on a hit or miss basis. The modalities I tried were numerous and I was thankful for the therapist I found to help guide me and to ask questions on social concerns. In addition to the lack of treatment programs there is a lack for coverage from insurance standpoint. All my treatments had to be paid for out of pocket.
I am termed high functioning and too old to qualify any programs to allow me to develop the skills to improve my life. As an adult I know from experience that I need physical rehab, social skill management support and guidance to identify the appropriate jobs for an adult with Asperger’s. I’ve found much more information now and various chat groups but that does not address the full range of needs.
Today there seems to be more awareness in the New England area as compared to Texas. I am considering looking at a short-term training program with the new knowledge I have. But after the training is completed I struggle on how to explain myself to a prospective employer in an interview. Today with the higher unemployment rate, age, and competition, I worry many employers may be hesitant to hire an older adult with Asperger’s. So to stay involved in life I volunteer at 3 organizations making a contribution to society and I am valued and appreciated.
In my personal experience the schools I attended were a lot more flexible in meeting my special needs than many of the organizations I have worked for. I am a living example of the need for more programs and support and understanding for adults with Asperger’s especially in the workplace and I do what I can to advocate for that end. My question has over the past several years has been, “What happens when a child becomes an adult?” The needs need to be addressed over a lifetime and not stop at age 21. I hope that my experience and what I have learned about living with Asperger’s can be helpful to others and their families.
What an amazing journey you have had. I’m so pleased for your successes and also a little saddened my son does not have the ability to be as successful as you have been. I know there is some ability in him, but there are no services to help him grow and learn new skills.
Thank you for posting your story.
Hello,
Congratulations for all of your successes along such a difficult road.
Unlike you I didn’t learn of ASD until I was 54y/o and within 48 hours self diagnosed. That was after five years of self imposed unemployment and trying to identify my problem. I am now 58y/o and have since received formal diagnoses, but like you have not had success at preparing for employment. Because of depression I too receive SSDI.
Tonight I found the following on the www and would like to share it with you.
Adult Aspergers Therapy
http://www.springerlink.com/content/936112x32h4u3331/
Nervenarzt. 2010 Sep 22. [Epub ahead of print]
[Psychotherapy of Asperger syndrome in adults.][Article in German]
Fangmeier T, Lichtblau A, Peters J, Biscaldi-Schäfer M, Ebert D, van Elst LT.
Abteilung für Psychiatrie und Psychotherapie, Universitätsklinikum Freiburg, Hauptstraße 5, 79104, Freiburg, Deutschland, Thomas.Fangmeier@uniklinik-freiburg.de.
Abstract
There is an increase in awareness in professionals that the Asperger syndrome (AS) in adulthood is associated with specific problems and burdens which may well differ from those in childhood and adolescence. The core symptoms of AS generally persist into adulthood, however in contrast to childhood and adolescence there is no specific support system for adults in Germany. Also the environment of the afflicted patient changes thus producing different challenges and problems. In addition a subgroup of patients with high functioning AS primarily presents in adulthood generally due to secondary psychosocial problems, depression or anxiety. Difficulties in social interaction, problems with modified daily routines and unforeseen situations cause severe frustration for the majority of the patients. While several therapy programs have been developed and implemented for children and adolescents, for adults there are none. Also there is a lack of comprehensive concepts addressing the specific needs of adult patients with AS. From an economic perspective this is particularly unfortunate since affected people often have good or excellent partial abilities and might be very valuable employees. In this article existing therapeutic concepts for AS are summarized and a newly designed group therapy program for adult patients with Asperger syndrome in Freiburg is introduced (Freiburg Asperger-spezifische Therapie für Erwachsene, FASTER) which specifically addresses the needs and problems of adult patients with AS.
PMID: 20857273 [PubMed - as supplied by publisher]
I have yet to acquire the entire publication, but encouraged by the abstract. Finally, someone is attempting to address our needs! Our culture appears impotent in our regard.
The Best,
Charlie
Charles. thank you for your reply. I volutteer to give me a structure so I do not isloate. and do not have to deal with the productiity issues of a payacheck. I got ssdi due to the depression also.
Thank you for sharing your story. I have 2 children with Asperger Syndrome and its various other disorders. One is 20 and is being trained to be a dog groomer. This is her first job and so far so good. My other child is 17 and will graduate high school this year. He is looking at colleges, so we will see how it turns out. They are lucky to be living in this time as people are more aware than when you were growing up. They both had school supports and support from OVR. Good luck in your life. Hopefully, services will eventually be available for adults too.
Greg,
am happy with what you are doing with your life now. You may not be seen equally famous as “Temple” here but you are a “light” to the people who are experiencing what you’ve been through. Go on with what you have started and God will bless you more.
Bec
Maria. thank you for your reply. The lady told me today that I had several responses on my article. hpe all is well. greg
Thank You for the article, my son is 22 and hasn’t been formally diagnosed yet and am having trouble finding someone who really can. One problem is he has a fraternal twin who is very high funtioning and he is constanmtly comparing himself to him,it’s a rough road indeed but your article has given me strenght to cope. Thank You
Matt Mom. It was a rough road for my parents and sisters. Now they area so much more understanding. I hope you have the strength to cope and work with your son. He needs patience. keep up the hope. greg
Greg,
I am the step-mother of a 20 year old college student with Aspergers. I am struggling with helping him with college level classes, and selecting a carreer. I do not want to discourage him but he is looking at carreers that require high social skills(like teaching or counseling) and I fear that he will face similar struggles to yours. How would you advise someone without telling them they cannot succeed? I too am having a hard time finding good information on adults finding help! Thanks for your article!
Renee. Well first here is e mail you can contact me with. what area of the country do you live in? Can you figure out what his interests are and what skills he is good at?. Share with him my story in being in customer service jobs or heavy people skilled jobs. See my parents were kind of on the critical side of things in life and never had the time to really know me. It was recommended that I get a job or training by a professional that I work with my hands. I wanted to prove I could go to college despite being told no. If my parents would have taken a positive twist of encouging me to go this way instead of comments like you think you are too good to get your hands dirty. The best thing would have been college plus some trade type of training. ie jr college plus tech school. my parents left it all up to me and that was not so good. parents were divorced, and father was making a career with exxon and arco. stepmother reaised me. My Dad had to help me with home work. Plus parents discounted my feelings about people jobs and I did what they said even against all odds. Now my father supports me and it would have been better eailer and maybe I would not be on his payroll at my age. Some colleges are aware of this now. Try a couple of books and try to get him to talk or read also. Apergers from the inside out by Michael John Carley, Solutins for adults with Asperger Synddrome by Dr. Lovett, Employment for Individuals with Asperger Syndrome by Yvona Fast. hope this helps let me know if you need more. greg
I can certainly appreciate your story. I was diagnosed years ago but because I had good support I never really felt like it mattered. I worked in IT as an independent contractor/consultant and with a partner who did all the people skills I did well.
Then starting in 2005 through 2009 things changed all of my family and friends, including my business partner, died. Cancer, accidents, heart attacks. I was the primary caregiver to both my parents.
When it was all over I was alone and terribly depressed. I ended up in the mental health system and now I’ve been in a homeless shelter for almost a year. Now I’m taking Asperger’s seriously. The problem is, as you’ve already discovered, there are no services. So, I’m doing what I can on my own to survive but every day is just time marked on a calendar.
Best luck to you!
Thank you for your reply. where do you live? How about making an application for SSDI so you can get some services and maybe housing. let me know if I can help you locate the mase. good luck to you also.
Thanks for taking the time to reply.
I currently “live” in Hayward, CA.
I have a SSI application in and have already been through the first denial. My reconsideration has just been sent and I should know something within a week or two. In my county (Alameda) I’m apparently already in the best situation there is. As for housing I can’t afford anything right now because I can’t rely on my GA benefits. It’s just a matter of time.
Ok this is what I had to do. I got turned down for disablity benfits. Once you get turned down get a social security disablity lawyer. No money up front from you. They get fee once they win case from a lump sum payment to you on back pay. It is a percentage. I have a friend that lives in Kenwood and maybe he knows of some affordable housing. I will be glad to provide my email if you have additional help. hope this helps. greg
I’m 49 years old and have recently been diagnosed with Asperger’s syndrome. I’m still looking for my first job; I doubt that I’ll be successful because there is no support available to me.
Thank you for sharing! I have a grandson that just turned 17. He is looking forward to college, but I am concerned with his organization and social skills, he will not fit in. He has a 504 plan in place at his high school, will that carry over to colleges also.? We were told by Trinity Services to apply for SSDI.