“I am truly the first CIP graduate”
During his 42 years of experience with students with learning differences and Asperger’s Syndrome, Dr. McManmon has worked on curriculum development, staff training, programme evaluation, and administering community-based programming. He has a unique perspective as he himself was diagnosed with Asperger’s syndrome at the age of 51 and grew up in a large family with several individuals on the spectrum. He has six children and 17 grandchildren, and is an avid artist, swimmer, gardener and traveller.
In 1984 he founded the College Internship Program (CIP), a post-secondary programme that support young adults with Asperger’s syndrome, autism with lower support needs, ADHD, and other learning differences as they make their transition towards college and starting their careers. With five centres across the USA, CIP is described as one of the most comprehensive programmes in the world for assisting young adults with learning differences to succeed in college, employment, and independent living. “I set up CIP to be a community-based apartment living programme for individuals being let out of institutions so that they could learn to live normally in a community with the additional services they needed”, Dr. McManmon proudly explained.
Autism-Europe: For you, what is the main evolution to occur since the programme began in 1984? Has the profile of the people you support changed over time?
Dr. Michael McManmon: The main evolution since we started would be the tremendous growth in our knowledge and curriculum over the last fifteen years (…). When we started, we were dealing with multiply disabled individuals who had severe psychological problems. It was very intensive. After the first ten years, we moved slowly over to students with Learning Differences and some had some autistic features. We did not have a name for them, they just exhibited more repetitive and perseverative behaviours and had more cognitive rigidity.
Around 2003, we started to identify individuals with Asperger’s syndrome and high functioning autism separately from our learning differenced students.
AE: You grew up in a large family with several people on the autism spectrum, so you have also come to understand autism from the point of view of a relative. What is the role of the family and relatives in the success of CIP students?
MM: In my family of origin, my parents became overwhelmed and did not know how to cope. During the 50’s and 60’s in the U.S. people hid problems and pretended that they were not occurring. I watched my older siblings make huge mistakes and my parents suffer through this with them without the support they all needed. It was a chicken and egg sort of problem. What came first the “untreated learning differences” or the “mental problems and addictions?” That is a whole book that is being written by me for the last ten years.
The family’s role switches when a student enters CIP. Before CIP the parents were highly involved in decision making and direct services with a student. They now switch to the role of “Facilitators”. In this role, they pay the bill, insure the staffing is good, and are supportive. The student takes over control, so that they can stand on their own two feet. CIP helps them bridge the gap.
AE: On the CIP website, we can read the following: “During the era of deinstitutionalization, I read Wolfensburger’s Normalization Theory while studying for my Doctorate in Special Education and wanted to implement it in a community-based program where students could experience living in normal living conditions”.
From your experience, what is the current situation in the USA regarding deinstitutionalisation and community-based programmes? What are the main challenges you are facing?
MM: Most services in the U.S. are community-based and most institutions have been closed. The main challenges are public funding for those who cannot afford the private options. Core basic services are spotty at best in most areas. Private services are very innovative and state of the art, but you need resources to access them.
AE: The CIP programme focuses on real-life skills in areas of social thinking, executive functioning, sensory processing and wellness to prepare students for independent living. At a glance, what can you recommend to those young adults with Asperger’s Syndrome to master their executive functioning in order to correctly achieve independent living? How can they avoid anxiety and forgetfulness, for example?
MM: Anxiety and depression are almost co-morbid with a diagnosis on the spectrum. (the chicken and egg again). We have found that a good sensory diet, including fun and exercise, along with a good sleep regimen and eating healthy foods is the magic formula for wellness.
Executive functioning: Obviously, if you are not doing the above, your executive functioning is going to be thrown off also. But there are at least thirty two areas of executive functioning to look at and assess with each student. Most people just think of “organisational skills” but it is much, much, more. Everything from being able to gauge or size up the demands of a task to estimating time or retrieving information. Doing the proper assessments will help a student to find the specific areas to concentrate on to remediate.
AE: Could you cite some examples of good practices from Europe related to the transition towards independent living?
MM: I think the independent living part is the easiest in many ways and in most countries they can get a handle on it. For example, in Denmark they have programmes for long term independent living for adults that are clustered in apartments, with a lot of autonomy for their clients.
AE: You were diagnosed with Asperger’s Syndrome at age 51. What were the biggest challenges you faced before receiving the diagnosis?
MM: My social thinking abilities were limited. I was successful in being able to do enough to run a business, get married and have children, but beyond that it was very limited. My diagnosis opened my world and helped me to understand myself and once the lid was off, I just took off. My special interest became learning all I could about all the facets of our curriculum. I am a “poster boy” for late diagnosis. I just started to apply the curriculum in each area to myself and then write it up so that it was more useful for our students. I am truly the first CIP graduate.
I have been able to navigate the world now, have a real relationship with my children, and daily I try new foods and activities and just add on to my repertoire.
AE: In an interview with the Internet Special Education Resources (ISER), you affirmed: “I now have children who have a human being for a father instead of a “human doing.” How has learning that you are on the autism spectrum changed your life?
MM: Now that my cognitive rigidity is dispersing I am open to new ideas and can work with others in groups as a colleague. I can learn new social skills, I have a self-modulator between my brain and my mouth. I can emotionally self-regulate through swimming, sleep and eating well. My fear has dispersed and I will try new things and new ways of doing things. I am determined to be as “normal” as possible, while I know I have superior areas of functioning at the same time.
I like spending “time” with others and just being with them.
AE: Do you have a message for other autistic people who are diagnosed later in life?
MM: Don’t let fear rule your life, it’s too short and you have so much to contribute to the world. It’s time to jump out of the box and explore and experience. Build the supports you need around you and try new things constantly. You will see the benefits once you engage. (I still mourn all the decades I refused to try Indian food and Naan bread!
Made for Good Purpose: What Every Parent Needs to Know to Help Their Adolescent with Asperger’s, High Functioning Autism or a Learning Difference Become an Independent Adult
Filled with practical advice and useful techniques, this book helps parents support their child with Asperger’s Syndrome to make the transition from an adolescent to a happy, confident, and engaged adult. With this essential guide, young “Aspies” can achieve independence and learn life-long skills for succeeding in college, work, relationships, and more.
Dr. McManon is also the author of Mploy, a Job Readiness Workbook scheduled for publication later this year by Jessica Kingsley Publishers.