On His Own?

12 Oct

When you look at your 10 year old child and dream of his future, do those dreams include having him live with you forever?  Mine sure didn’t…

Last fall, I attended a certificate program in Special Education and Autism at the local community college.  Gregory had been diagnosed with Aspergers Syndrome (AS) the year before and I was still actively trying to learn as much as I could about the disorder and treatments.  The course required that each of us interview an Autism Service Provider and prepare a presentation about their services. 

Gregory had been attending a therapeutic social skills group for boys his age at a nearby mental health center for about 6 months.  I knew that this center also serviced adults on the spectrum, so I opted to interview the director of the Adult Aspergers Services Group (who also happened to lead Greg’s AS group).  Happily, the director (Eve) was most willing to meet with me and discuss the services offered to adults on the spectrum.  So, I prepared my set of questions and set off for the interview, feeling upbeat and studious.

During our discussion, Eve informed me that this group (adults over 21, with AS, High-Functioning Autism or PDD-NOS) is very under-served, with some people having to travel over two hours to participate in a program because nothing closer is currently available.  Most of these individuals had not received any type of services as children and had been misdiagnosed, if diagnosed at all.  Due to their generally poor inter-personal skills, most of the group members are un[der]employed, still live with their elderly parents and have very few friends or spouses.  This clinic offers these individuals a variety of different programs, including counseling, college planning, workforce skills, personal/hygiene, life skills, social skills and recreation.

So think about this…  Most of the participants in Eve’s programs are college graduates and in many cases are highly intelligent.  But due to their quirky behaviors and inadequate social skills associated with Aspergers Syndrome, they are frequently unable to obtain and/or retain meaningful, gainful employment.  Since their employment is so limited, these individuals cannot afford to live independently.  In most cases, these highly intelligent, highly skilled individuals have no option but to live with parents in the bedrooms of their childhood.   OK, that’s not ideal you might think, but living with your parents isn’t all bad, right?

But what happens when their elderly parents become infirm or pass away?  These Aspies, unable to support themselves or function adequately within society, frequently fall under the auspices of the Division of Developmental Disabilities (DDD) and are put onto waiting lists to join a group home.  The DDD is set-up to provide a certain level of support (financial and otherwise) for adults who are developmentally unable to take care of themselves and live independently.

The problem comes with the rapidly growing backlog of people needing placement in group homes.  With 1 in 100 children currently being diagnosed with Autism (according to the Centers for Disease Control and Prevention), this is the fastest growing developmental disability in the US.  Without adequate treatment, these children will grow into adults who require a lifetime of continuing services from the DDD.  Although there is already a significant shortage of DDD group homes and other appropriate facilities, there is currently no plan in place to meet the needs of this rapidly expanding population.

As alarming as those facts sounded, they didn’t touch me directly until Eve casually said, “So, you should put Gregory onto the waiting list right now.  Then, by the time he needs it, there might be a facility available for him.”  I blanched and struggled to understand what she was telling me.  I must have misunderstood.  “Do you mean that you think Gregory will never be able to live independently?” I asked in shock…  That couldn’t really be what she meant – She worked with Gregory – She knew how bright and talented he was.   Eve didn’t answer directly.  She looked at me sadly and nodded.

And with that, my world shifted on its axis.  Confused and reeling from the news, I couldn’t think straight.  “No!!!” I wanted to shout, “That can’t be true!”  But I didn’t.  I am sure my face and body language conveyed my distress, but I tried to calmly gather my papers, thank her for her time and exit as quickly as possible.  Going down in the elevator, I shook my head in denial as tears welled up in my eyes.  I held myself together until I got to my car…and then the floodgates of despair opened.

Suddenly, I was seeing the future in a different light.  The possibilities were not bright, wide open and endless as I had once thought.  Gone were my hopes of Gregory making his own way in the world – finding success and fulfillment through his career of choice.  Gone were my hopes of holding a grandchild in my arms while Gregory and his wonderful future wife look on proudly.  Gone were my dreams of globe-trotting to exotic ports with my husband during our empty-nest years.  Instead the future looked dark and bleak and hopeless.

I cried and cried, trying to get my head around this future that I had never imagined.  Of course, I was willing to do whatever needed to be done to help and support my son, but would he really need all that?  Yes, Greg has his quirks and struggles with some things, but overall he is doing well in school, managing things at home and progressing well.  Surely, he would one day be able to live on his own…

But as I thought about why Eve made her recommendation, I came to see some of the unspoken factors that may have lead her to that conclusion.  As one example, Aspies are frequently lax in their personal habits, because they don’t value the benefits the way an Neurotypical (NT) brain does.  An Aspie doesn’t see well through the eyes of an NT (and vice versa!) and therefore may not fully appreciate that it is not pleasant for that NT to see or smell an unkempt person, much less work or socialize with one.

Yes, Greg is perfectly capable of bathing himself and putting on clean clothes, but if I weren’t there to guide him, would he see the need to do these things on his own?  Perhaps not – perhaps he would go unwashed and wear the same clothes for days.  Yes, at some point in the future Greg could probably shop for groceries and cook a meal, but would he value the need to eat a balance diet and make the effort that that requires?  Perhaps not – perhaps he would eat his favorite take-out pizza 7 nights a week.  Yes, Greg could make his bed, vacuum his room and do the dishes, but on his own, would he choose to do so???  And the list goes on…finances, home maintenance, health, fitness, socializing…  In society, we do necessary ‘chores’ on a daily basis – even if we don’t feel like it.  We do these tasks, because we NTs are aware of the societal benefits of them and the consequences of not doing them.  An Aspie may not value the benefits the same way, and may not even be aware of the consequences that society will impose for not doing so…not a recipe for success.

It dawned on me that, even if Greg could eventually obtain stable, gainful employment and earn enough for his own place, it may not be sufficient for his needs.  For although Gregory would most likely be capable of doing all the tasks required of living independently, without guidance he may not choose to do those tasks.  And that is where an on-going NT influence (whether it be me, a roommate, a wife, or the Resident Assistant at a group home) would be beneficial.  And a group home, filled with fellow Aspies, might be a very positive, nurturing experience.  It could be a very comfortable, supportive environment within which Gregory could thrive – understood and appreciated by those around him.

So eventually I came around to appreciating Eve’s recommendation for what it was….good advice.  We don’t know what the future holds for Greg.  And while I sincerely hope that he will eventually lead a fulfilling, happy life on his own, I can see that some on-going beneficent NT oversight will most likely be necessary.  His father and I will not be around forever, so it is prudent for us to plan for his future.  As much as my heart resists it, we should sign Greg up with the DDD, so that at least he has that fall-back option should he need or want it.   Sigh….

To be honest, having come to that decision months ago, I still haven’t taken any action.  That future seems so remote and Greg’s progress has been very impressive over the last two years…  Besides, AS is becoming almost cool these days, with documentaries and box office movies being made about it and Aspie characters starring on almost every hit tv series.  As the general public becomes more aware of AS and the unique strengths that many of these individuals possess, future employers may very well be seeking out Aspies with lucrative, adapted job opportunities, instead of shying away from them in fear, misunderstanding and/or censure.

In a wonderful book by Temple Grandin and Kate Duffy – Developing Talents:  Careers for Individuals with Asperger Syndrome and High-Functioning Autism, the authors suggest ways to identify and tap into the potential talents of those on the spectrum.  This sage, practical book discusses all aspects of the search for suitable vocations – providing invaluable career advice to and from real people with AS.  So taking all this to heart, I am not abandoning my hopes and dreams for Gregory’s future.  Sure, he might take a little bit longer to ‘launch’ and he may benefit from on-going supports, but that’s OK.  Working together, we will do our best to prepare him for an independent, successful life – one on his terms, of his choosing.  That is my dream.

*  *  *  *  *  *

In spite of society’s growing awareness and acceptance, it remains an urgent priority to address the needs of the expanding autistic population within our social services across the country.  Stop-gap measures must be put in place immediately to address the huge gap in current unfulfilled needs within these organizations.  But equally critically, a strategic plan must be developed to address the anticipated needs of the future.  Society cannot just put its collective ‘head in the sand’ and hope these problems will go away.  We owe it to ourselves;  We owe it to our children…

Let’s make it happen!    – Joanne

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15 Responses to “On His Own?”

  1. nj2nh October 12, 2010 at 10:26 am #

    I think this is the best one yet, Joanne. I often wonder about the parents of adults who are disabled in some way, how they planned for their child’s future, if they made plans and whether they worry about what will happen to their child once they are gone. I usually think of this in terms of the adults with Down’s Syndrome that I see with their parents – on vacation, out to dinner. Some are quite elderly and are still the caregivers. Gives me pause.

    • Joanne Houldsworth October 12, 2010 at 10:52 am #

      Thanks Virginia. I have to say that it is a very emotional topic for me. All we can do is our best and then have faith that things will work out…
      The critical lack of services for this growing population is of great concern. I know the state has budget issues (as do we all), but we cannot be short-sighted…this issue will not just go away. OK…off my soap box now. :-)

  2. Gavin Bollard October 14, 2010 at 12:46 am #

    Seriously, I think you’re getting a little too negative here. You need to remember that most of the adults who are diagnosed with Aspergers today weren’t diagnosed as children. They didn’t get any early intervention and they didn’t get understanding.

    The chances of a child becoming independent increase greatly with intervention.

    Things you can do;

    1. Consider sending him to Scouts or some other organisation where he can begin to pick up “life skills” and learn to get through the day without your help.

    2. Get him into acting. Aspies are quite good actors and we often find that we’re acting for most of our adult life. Acting will help him to learn how to blend in. For older people, Debating and Toastmasters could be more appropriate.

    3. Find and follow his special interests. Whatever he’s interested in, that’s the best career path.

    I know that it can sometimes feel gloomy but it’s really not as bad as it seems.

    • Joanne Houldsworth October 14, 2010 at 7:42 am #

      I hear what you are saying Gavin. It is true that the individuals who Eve works with had few, if any services as children and as you say, didn’t have or receive understanding, which I think would be the most damaging or difficult aspect. But many kids now are receiving correct diagnoses, understanding and supports, so one hopes that future life will be more enriching for them.

      That was why I was so surprised by Eve’s suggestion about Greg… But her point was that we just don’t have enough history yet to know, and that it would be better to be prepared.

      BTW – Regarding your suggestion about acting – Greg is a really good actor and has been in a number of local productions already! It is definitely a good fit for him!

      Thanks for your prespective…. I didn’t mean to come across as too negative at the end…I am actually hopeful and cautiously optimistic! :-)

    • Notready Yet November 29, 2011 at 9:02 pm #

      Scouts?? Oh yeah – right — good choice – guarantees he’ll be bullied by “good kids”. Acting and following his own personal interests are viable – reward the good stuff, and slip in enough day-to-day functioning to allow independence – never mind a typical; “well rounded” education – that will only cause frustration due to crap he won’t understand of care about, which will lead to losing his academic momentum.

      • Gavin Bollardg November 30, 2011 at 4:18 am #

        @Notready Yet,
        I’m presuming that you either have no scouting experience or that you had a bad one. I’m sorry, there are always some bad experiences which ruin it for everyone.

        Scouts has a basic creed which says “We’ll do our best”. It doesn’t say I WILL BE THE BEST. It allows for people with all kinds of different abilities to do their personal best and be rewarded for it.

        Scouting also has a very large special needs section and help is always available. If your local scouting group isn’t a good fit, then move on and find one that is.

        You might find the Autism and Scouting page to be useful.

        http://www.facebook.com/autismandscouting

  3. ankhoneirosinfinitus October 19, 2010 at 3:18 am #

    Your son’s future is up to him. I agonized for years over what is wrong with me that makes it hard to get out on my own, and when I realized that it’s the world there’s something wrong with, I made the decision to get out there on my own anyway. I leave for Washington and independence this Saturday. Of course, I have much fewer setbacks than many aspies. Still, I think that if there isn’t room for everyone in society, then room needs to be made.

    • Joanne Houldsworth October 20, 2010 at 5:18 pm #

      Good luck Ankh and best wishes for much success out on your own!

  4. PC (not Mac) October 26, 2010 at 4:05 pm #

    Forgot to reply to this last week. One part that gets over looked here is your own situation. Your need to consider amending your own estate planning to reflect this situation.

    In addition to DDD, you need to look into setting up a special needs trust for Greg. Then if your estate is getting split between your children, Gregs share should go to the trust and not to him directly. If it goes to him directly, he will proably be required to use that and exhaust that first to meet his needs before any other funding will kick in.

    I’ll send you some links to some articles on this.

  5. Scott November 11, 2010 at 9:05 am #

    As a 30 year who wasn’t diagnosed until five years ago I think that therapist needs a good whack on the side of the head. Her casual comments to you make me think she see’s your son as nothing more than a statistic. They didn’t have any of the things when I was his age that they do now. I was on my own and I struggled greatly – clueless educators, peer rejection, relentless bullying, suicide attempts, and plenty of troubles at various jobs but I did eventually manage to carve out a little chunk of the world for my own and I’m sure you son can too. It might not be when he’s 18 but judging from watching his videos, it’ll be long before your old and enfeebled.

  6. Laura Gilmour November 15, 2010 at 2:00 am #

    Hello

    I just found your website. My name is Laura. I am a 25-year-old university student with Asperger’s Syndrome who will be entering graduate school in educational psychology in September. I was not ready to be independent at 18 and am still not completely independent, but I am continuing to learn and progress as an adult. I believe that by the time I’m in my 30s and finished graduate school, I will be able to financially support myself in a research based career. My family and I agree that if I do not marry, I will co-own a house with my parents so we can maintain a large property to keep our animals we love so much. My parents had me young (only a 22 year age difference), so I will hopefully be a senior citizen before I’m living alone. I believe I will be able to maintain a house with occasional outside support from extended family (e.g. I might need help doing a home repair or traveling to an unfamiliar place for the first time). I am fortunate enough to live in Canada and be able to complete my studies close to home so I can recieve the support of my family. It is difficult having strong academic skills while struggling in other areas. Visit my website to find more about living as a young adult with AS.

    • Joanne Houldsworth November 15, 2010 at 8:44 am #

      Laura – Thanks so much for your comment. Your story gives me hope! Good luck – it sounds like you have a good head on your shoulders, a good plan and a wonderful, supportive family.

  7. Jack S Wolfie December 1, 2010 at 5:45 am #

    As an adult with aspergers (now 30) I wasn’t diagnosed until my late 20’s due to other issues I was dealing with at the time. I’ve had a mixed bag of what people call a career and a social life. I found a home in the tech industry, it’s very friendly to those who do not share the same interface to the common world around us (More so out west, than out east).

    Of the many things I’d like to tell you, the number one thing is to embrace the diversity. I hate how this is treated as a disease and ailment, being different is not a bad thing, and I feel much damage is done by trying to make us “normal”.

    Another thing I have learned is the value of persistence. Realizing life is hard and full of failures, never giving up will go a long way to cutting your own path in this world.

    I can’t say life is easy, I honestly don’t get most people and it’s rare I make new friends and the work and social world are a minefield. I laugh at myself a lot, it makes it easier when I eat my own feet.

    I think what I’m trying to get at is to keep a positive attitude and to adapt, overcome, and never give up.

    • Joanne Houldsworth December 1, 2010 at 7:23 am #

      Jack – I love your attitude…I’m sure it will take you far in life! Good luck.

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