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The Open-Face Generation: Worrying about Adult Children with Developmental Disorders

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by Elayne Clift
Autism Asperger’s Digest
 | March/April 2010

He is a kind, affable, good-looking young man of thirty-four, out of work and unlikely to find another job any time soon.  In the last ten years he’s had more than two dozen of them, each ending in failure because he cannot sustain the energy it takes to show up every day, let alone to cope with the demands and stimuli of the workplace.  Premature at birth and diagnosed with a “learning disability” at the age of three when his language skills were all but absent, he recently received the newer label of PDD:  Pervasive Developmental Delay, or Asperger Syndrome – one of many disorders on the “autism spectrum.”  His parents have spent years seeking appropriate support systems and picking up the pieces when things go wrong. They are exhausted and worried.  What will become of their son when they are gone?

The young man I’ve just described is my son, and my husband and I are his worried parents. Once members of the “Sandwich Generation” — that group of adults who deferred marriage and childbearing and thus found themselves in their late thirties caring for both young children and elderly parents — we now feel like members of an “Open-Face Sandwich Generation,” aging parents who are worried about their developmentally disabled adult children.  We are large in number, but invisible.

A recent search for support groups for parents like us yielded numerous websites but the support they offer is for parents with children who are still of school age.  There are even support groups for parents with Asperger themselves.  What there isn’t, as far as I can tell, is a support group for the “Open-Face Sandwich Generation.”  And yet, there are many of us.  I know a therapist who reports nearly a dozen clients who are struggling with their fears about what will happen to their adult kids when they themselves are no longer around to care for them. It’s nothing short of a silent epidemic.

The behavioral dimensions and the challenges of living with PDD vary, as parents know.  Many people with Asperger marry, have children, and work in meaningful careers. Some are brilliant artists, mathematicians or scientists. TempleGrandin, who earned a Ph.D. in animal science and teaches at Colorado State University, is the ‘poster child’ for possibilities when living with autism.

But often, as we know, people with PDD and other developmental disorders lack appropriate social skills.  They miss cues or overstep boundaries. Frequently they show little affect, even in the face of very good or very bad news, or they take things too literally and miss jokes.  Sometimes they can’t keep their homes free of clutter, or they can’t drive. They may demonstrate obsessive behaviors that drive other people crazy.  (My son separates the foods on his plate and dissects sandwiches to remove ingredients he dislikes).

There can be more worrying manifestations.  I don’t want to think about how much money my son has “lent” to “friends” who never pay him back.  So far his bad judgment on some occasions has not put him in harm’s way, but it could.  All Asperger parents know that, and that’s why we are desperate to put plans in place (and to make financial arrangements) that ensure our adult children’s safety and comfort when are no longer around.

In the face of a serious ailment our son was recently confronted with, my husband and I began working overtime to put some systems in place for both the short and long term.  Our “lessons learned” might be of value to others.

First, since many young adults with PDD do not do well living with others, we began to explore the idea of a group living arrangement.  What we envisioned was a sort of communal living arrangement where perhaps several PDD folks lived together in a house with minimal supervision by a staff person. That proved untenable – they don’t exist – for a number of reasons, including the fact that young adults with PDD do not do well living with others.  So we did one of the smartest things we’ve ever done besides setting up a secure trust fund:  We bought a small apartment in a safe, pleasant complex where our son now lives.  Our investment was possible in a time of foreclosures and ridiculous interest rates, and it is paying off for our son who enjoys his sense of independence.  It is also paying off for us because we are now able to stop worrying about where he will live long-term.  Granted, this decision, like many others required in caretaking, required resources, but from a cost-benefit perspective, it made good sense.

We then connected with the Vocational Rehabilitation services offered by the state where our son lives.  With their help, he found a job, but his issues with sustaining the necessary behaviors surfaced again (including an inability to follow up with Voc Rehab), and they closed his file; caseloads are large and many clients are able to carry through with requirements.

At that point we applied for Social Security Disability which would ease our financial burden while allowing our son to still earn income, ideally from a part-time job. Knowing that they always deny claims and appeals, we also lined up a good lawyer experienced in dealing with those denials.  The outcome of all this is still pending, but here’s the lesson to draw from this effort: Document everything!  My husband, a retired bureaucrat, has extraordinary documentation skills; they made a huge difference in the lawyer agreeing to take our case (she only gets paid if she wins).  He set out to document absolutely everything in our son’s history, starting with his premature birth and moving on to his early diagnosis of “auditory processing delays” and his remediation in special education programs from the age of three.  Every report from a school, every assessment by a psychologist, every conceivable record that might be relevant is in the file marked “Social Security.”  We’re told we have “a good case.”

We also went beyond services offered by lawyers or public sector programs.  We looked for, and found, a private, non-profit, university-based start-up organization specializing in career-related skill building for people with both physical and mental disabilities.  Started by a young man disabled himself by an auto accident, the work they do is already widely recognized and respected in the community, to which they are very well connected.  (That’s how we found the lawyer as well as someone to grocery shop and cook/freeze nutritious meals once a week).  They are working with our son on his job skills, his communication abilities, and his sustainability issues, using everything from assistive technologies to role plays and reminder phone calls.  They’ve even gotten Voc Rehab to re-engage.  (“We know the right people.”) The lesson?  Look for private sector support when public services are not relevant, efficient, empathetic, or sufficient.

These have all been useful steps to take.  Still, the challenges we face are enormous and they don’t disappear.  The worrying never stops.  At the same time, we finally feel that we’ve cobbled together a team of people and support systems that are easing our burden (and relieving our daughter’s fears of inheriting them).

There is that, and the hope that soon there will be greater recognition of the dilemmas faced by the “open-face sandwich generation” — and viable solutions for their growing numbers.

Elayne Clift is a writer and adjunct professor at several New Englandcolleges. A correspondent for Women’s Feature Service, columnist for the Keene (NH) Sentinel, and reviewer for the NY Journal of Books, her latest book is ACHAN: A Year of Teaching in Thailand (Bangkok Books, 2007).


Copyright © Autism Asperger’s Digest. 2010. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.

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  1. Nancy Schneider says:

    I agree that your article on parents/caregivers of of adults with Asperger’s is a much needed topic that should be discussed. As a parent of a son, recently diagnosed at 27, I have concern’s about his future. He has his degree, but was unable to find a job in his field. Interviews did not go well. He is now working fulltime in an unrelated field. We want to help him to live independently and for him to trust in his own ability to make decisions. I, too, wish there were more forums to learn what others are doing and how they handle it.


  2. Lori Porter says:

    Elayne Clift,

    THANK YOU for writing the article “The Open-Face Generation” for the March/April 2010 Autism Asperger’s Digest! So much of your story reflects the situation with my sister. Do you have an update on the status of things for your daughter? She is also awaiting SSD (been denied, waiting for a hearing date), has been working with VR (they don’t know what to do and have given up), and we are researching housing options for her.

    We are in such a similar place, that after reading your article (fantastic, by the way!), I am so very curious as to how things have progressed for you. If we can learn from the months following this article, we would really appreciate it.