Guest post by Merope Pavlides, editor of AutismAfter16.com, author of Animal-assisted Interventions for Individuals with Autism and mom to two sons, one of whom is on the autism spectrum.
Autism is not a condition of childhood. Autism follows the person. It follows the person into the workplace, the community, adult relationships and health care. Until recently, however, little attention has been paid to issues surrounding adulthood with autism. Fortunately, we have now begun a national dialogue, and Autism Speaks is bringing its voice—and resources—to the discussion in a big way.
On January 26th, Autism Speaks held a research summit entitled, “Adults with Autism: Sharing Ideas, Filling the Gaps,” in Chapel Hill, NC. The event was co-hosted by Extraordinary Ventures, a model employer of adults with autism. Extraordinary Ventures was founded by Autism Speaks supporters and parents Lori and Gregg Ireland.
The meeting brought together many premier scholars on adult autism issues, as well as Autism Speaks representatives, autism service providers, parents and donors. My husband, Peter Emch, and I were invited to participate as parents and long-time supporters of Autism Speaks. The very fact that Autism Speaks included parents in an event like this is hugely meaningful, because it grounds the research agenda in real-world experience and need.
Moderated by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D., the meeting provided the opportunity for investigators to present overviews of current research projects funded by Autism Speaks and for all participants to ask questions and share ideas. The morning session showcased studies aimed at describing autism spectrum disorder (ASD) in adults, while we spent the afternoon with prescriptive research involving topics such as how to improve interventions.
Morning keynote speaker Marsha Mailick Seltzer, Ph.D., of the University of Wisconsin’s Waisman Center, outlined “Trajectories of Development in Adolescents and Adults with ASD.” Afternoon headliner Paul Shattuck, Ph.D., of Washington University, discussed “Service Use and Outcomes among Youth with ASD.” I found it interesting that both Seltzer and Shattuck noted that, despite few published studies on adults with autism, there is an abundance of data awaiting analysis. This means that we need to be investing resources in finding the meaning in the information that’s already available.
As a parent of a young adult with autism, it’s gratifying to sit in a room with so many smart, energetic people and learn that they want to bring their talent and enthusiasm to bear on the same issues that worry me as a parent. I’m also a special educator. As such, I’m so glad to see researchers demonstrating concern for how academic findings translate into real-life practice. While it’s crucial that we continue to deepen our understanding of what life is like for adults with autism, it’s just as important to make immediate progress in improving their lives.
I was especially excited to hear so much conversation on the topic of our adults as learners. As a society, we tend to think about the autism service system for adults as involved exclusively in care giving. Rather we need to develop dynamic supports that provide ongoing opportunities for personal growth and development. The summit allowed those who are studying adult needs to connect with those who are examining skill-building models. It’s this type of collaboration that fosters new programs that not only look good on paper, but also work in the real world.
Finally, participating in an event like this reminds me of how important it is for families to understand that they are integral to the research process. Sometimes we feel as though investigators go about their work in ivory towers without understanding the real needs of those on the ground. As families, we must be active participants in the research process. Not only in the sense of filling out questionnaires and providing information, but in terms of actively making use of the knowledge emerging from this research. That doesn’t mean we need to bury our noses in scholarly journals. It does mean that we need to enter into thoughtful discussion with scientists about how to incorporate what they are learning into what we need from adult service providers. Good scholarship is being conducted through Autism Speaks funding. As a community, let’s not allow it to happen in a vacuum.
[Editor’s note: Thanks to our grant search engine, you can explore Autism Speaks-funded research concerning adolescents, adults and related services here.]
This is a blog post by Barbara MacArthur. She was diagnosed on the autism spectrum in her mid seventies and her son Howard also has autism.
My husband and I split up before our son was born. He left the city and I had no idea of his whereabouts. He had given up his job and later I found he had left behind a lot of debts which were nothing to do with me, but being a muggins I managed to repay them as I continued to work until a couple of weeks before the birth. I did not tell anyone that I was pregnant as I was lucky it did not show and I was afraid of losing my job. (I had to leave a couple of weeks before the birth, as there were no special arrangements in those days).
We heard no more from Derek until one day, having taken Howard out in his pram; he pulled up in his car. I thought he wanted to look at the baby, but instead he asked me to the movies. It was the last thing I wanted to do. I said no, and he went, and that was the last I saw of him. At the time these events felt tragic, but now Howard, who is 57 and still living with me, and I smile at this. I thought Derek was strong and dominant. I thought I was weak and feminine. I see now that I did not know who I was then, and that I was the strong one.
When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic. “Just one of those things,” the doctors said. One told me he was “a write-off.” Another advised, “Stop sacrificing yourself, put him in an institution and forget him,” but having Howard adopted was an option I never considered. It seemed such a ridiculous suggestion, and I was sure I could work to support us.
I always had to work, there was no choice. My husband never supported us and I did not know where he was. Howard was a bonny baby and weighed 28 lbs when he was 6 months old. Social security money would have been insufficient to keep him. He always had a large appetite and his extra-large size clothes were expensive. In 1973 my son received an official letter to say my ex-husband had died inManchester. He had never remarried so my son was his only relative, but nothing was left except just enough to pay the burial expenses. It was very sad because he was well educated and handsome, and had served as an officer in the Royal Artillery during the war. Unfortunately, no widowed mother’s allowance, because I had divorced him in his absence (by newspaper advertisement) to make sure I could keep my job – married women were always the first to be made redundant.
In those days there was no allowance for one child or for a handicapped child or lone parent. I had to smile when I was refused a mortgage because my husband’s signature was needed in those days, even though he had left his job, I still had no idea where he was and I was in full-time employment. I managed to get enough cash to buy a very old house with a dodgy roof, no bathroom and an outside toilet. It was cheap because of its condition, but it was all I could afford, and it took me ages to clean it up, get rid of the cockroaches, beetles and mice. Somehow I managed to carry out some essential repairs myself until, over the years I saved enough to pay professionals for proper improvements and repairs.
Once, when my son was very small, I did give in to pride when I was on my uppers and applied for help from a charitable organization which had been set up to give financial and other support to unmarried mothers. They had extended their remit and had given regular financial help to widows, widowers and single dads. I felt so embarrassed when they turned me down flat in such an unpleasant way telling me in no uncertain terms that my it was my husband’s duty to support my child and me – as if I did not know that already! Unfortunately, the phrase “Tell me about it!” had not yet been coined. Life is so funny – thank goodness I could see the funny side of it.
The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens. Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of goods to the floor. Could you blame the staff for threatening to ban us? When I took him to the beach he had to be watched all the time. He had a habit of plonking himself on girls’ tummies when they were sunbathing. And if the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: “Why don’t you control that effing boy! Women like you shouldn’t be allowed to have children. You should be sterilized.” Even doctors did not seem to understand autism and no facilities or support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement.
I am proud of my son for what he has achieved. He will always be autistic and be considered by many as being ‘eccentric’ or a ‘bit odd’, but he is popular and has a tremendous sense of humour. He is great company, enjoys his hobbies and is kind and affectionate. He is an extremely happy person.
A few years ago my son, Howard, and I signed on for part-time computer courses because we were both computer illiterate. A Disability Officer at the Jobcentre referred him to the classes and I joined too, partly because I felt my son needed a ‘helper’ to cope with his learning difficulties. I need not have worried. We both became hooked on computers and ended up by both signing on for a full-time course at a local College in 1998. My son became so proficient that the tutors nicknamed him ‘cyber-junkie’ and the name has stuck. We both lost education in our youth – me at the age of just 14 because my school was destroyed by explosive incendiaries during World War Two – my son because he was refused admission to any school until he was 10 years old because he could not speak until then. As the local Education Department put it in their letter to me “the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education”
We completed the second year of full-time studies at college. An assignment Howard chose to complete was about shopping on the Internet (5,000-plus words plus illustrations) and he named it ‘Window(s) Shopping’. Despite his slight speech impediment he gave a great 20-minute presentation of the subject in front of class and tutors. It was very enjoyable for everyone. I chose to compose an assignment about elderly people surfing the Internet and I called it ‘Cyber-Wrinklies’.
I used to be a full-time carer for three people – my elderly parents and my son. My parents gave up their Council flat in Llanrumney and lived with my son and me for 16 years when we cared for them. In July 1982 I was lucky enough to be able to take early retirement, as it really had become a 24-hour a day job at home. Some years ago my parents died within a month of each other – both in their 90s, in our home, leaving just enough money to cover cremation expenses. They had dreaded the thought of going to a nursing-home, they went suddenly and without pain, first my father with a heart attack and then my mother with a massive stroke.
My son and I were both thrilled to gain our Computer Science qualifications and continued our studies. Howard graduated from University in 2003 – Computer Science. We are both very happy and have made lots of friends through our IT interests. Our life was transformed. We owe a lot to the tutors and staff at college and University and those who have set up these educational schemes.
Howard and I complement each other in that we have similar interests — computers and bookshops, for instance — yet we go in different directions. Howard loves downloading train simulators from different countries of the world on to his virtual railways. He has become hooked on music from YouTube. Howard loves Enya. I like downloading photos of tropical blue seas, palm trees and beaches. I like looking at different websites and what is going on in the world, especiallyUSpolitics. Howard is wary of the telephone, young children, noise, dogs, yet we both love heavy metal (noise) like ‘Queensof the Stone Age’, ‘Rammstein’ and Dave Grohl. Howard used to tease me because I loved all Leonard Cohen CDs, but later he became hooked too.
We are both loners – I suppose that is the autism in us. It was not until my father was quite old that it dawned on me that he always had the classic symptoms of autism. He had no formal education and joined the Royal Navy at the outbreak of the Great War (WW1) when he was just 16; he was well read and considered very clever, but extremely eccentric. When I thought back to my childhood I realized that I was ‘different’ but I was not diagnosed as somewhere within the autistic syndrome until I was in my mid-70s.
Now I am 85 and still Howard’s only carer, though he needs guidance more than care these days. I tell people that as I get older and less strong physically, we “prop each other up”, but that is partly to raise Howard’s self-esteem. He likes to consider himself my “nurturer”, a word he found on the web. I joke sometimes about pensioners who say they are lonely; I wish I had the chance to be lonely. I enjoy time on my own, always go to bed late and sometimes get up in the early hours and, if I am lucky, watch a late-night film drama. Tonight as I write he is in bed and I have just put out the rubbish bags. He helped earlier by emptying waste-paper baskets around the house, so it is team work. But he is often in his own world in his mind.
We lead a happy life. Coming back from town this morning we were dodging the traffic and continually laughing for no particular reason. But I worry what will happen to Howard when I die. My ex-husband died of cancer inManchester (this we learned by letter in 1973). We have our own home and Howard would want to remain here. There must be many carers in similar circumstances throughout the world who lay awake at night wondering what will happen when they are gone. Howard loves his home and is happy here; it would break his heart to be moved.
We were very lucky as we survived DESPITE the system – not because of it. I hope eventually all of you will be lucky too.