Wednesday, April 2, 2014

Shifting Paradigms

I have written before ( ) about the importance of independent living for those young adults I see on a regular basis.  But the more I think about it, and the more I learn from these friends who "speak" through their typing rather than their voices, the more I realize we need a major shift in how we provide support.

The people working in the adult sector of the disability field are generally very caring and well-intentioned.  They want to do their job and they want to help their clients.  But, unfortunately and all too often, they are not very well-prepared, nor are they given much in the way of direction or support for what they are doing.

Just yesterday, I spent an hour with each of three of my regular typing friends and all three typed words to this effect (actually I think the words were identical each time):  HELP ME LEARN TO LIVE ON MY OWN.   I am seeing this plea more and more frequently - usually a sign to me that I am not really paying attention or giving them enough indication that I really hear what they are trying to tell me.  And so, I reflect . . .

When young students with autism first entered the school systems back in the 1970's, it was common for a large group of professionals to gather to discuss just how to best provide for their unique educational and social/behavioral needs.   I have written extensively on this blog about all I personally learned  along the way, mostly from the students themselves - and of course their parents and families.  Now it's my turn to learn something about adults with autism, and in particular those who do not speak and still need support for just about everything they do in their lives.

Yes, and that's exactly why this at first might appear puzzling.  They DO need help in so many ways - often in areas of self-care, certainly in getting around the community, finding and maintaining a place to live, handling financial matters, and on and on.  What can they possibly mean when they repeat a desire to live on their own?

How fortunate it is that we now have a way to actually ask them for more information.  I am here to share with you what I am learning in hopes that you might keep all of this in mind and help me find ways to change the way we provide support to these individuals when they enter the various programs that exist to help them be successful and happy in life.

What is it they want?  Well, it really should not come as a surprise that they want something meaningful to do each day.  They like having REAL jobs, they like going places and doing things like others their age.  And yes, in spite of what you might have heard about autism, they want to have friends - again, REAL friends, not just people who are paid to spend time with them.   What might come as a surprise to those who don't really know these folks who type is that they also want to keep learning.   The greatest frustration comes from being treated as someone who doesn't know much, or isn't interested in what is going on in the world around them.  They want everyone to know they are intelligent - often HIGHLY intelligent - and they would like to be treated accordingly.  So, if that day job involves shredding papers or washing dishes or stacking shelves at the library, could we please add an extracurricular activity that is more intellectually challenging?  Could we at least discuss the news of the day, read a paper, visit an interesting web site, have a meaningful discussion?  And if their interests and talents are more in line with being an artist, writing poetry, or preparing a presentation for a conference, can we perhaps find ways to help them pursue that as a career rather than some menial, repetitive task?

They want to do as much for themselves as possible and this differs from the care model that many of our workers are familiar with in nursing homes and other settings.  These young people - and older ones too - need help to become just as independent as possible.  We should not be doing things for them that they might be able to do on their own.  We SHOULD be developing the mind set and the programming that will allow them to continue to progress on the road to independence, in every possible aspect of their life.  Ideally, this is what the school programs have been providing up until graduation, and ideally it should not end at age 18 or 21.

I realize this is a huge paradigm shift for most of us, but I can assure you there are many, many young people in our schools today who will benefit if we can make the shift, and will surely suffer if we do not.  It is worth our time, attention, and energy.


  1. Loved your article! I certainly agree with what you and your clients had to say. The adults I have been in contact with want the same independence your clients suggested. Adult programs and families need to provide stimulating environments that provide opportunities for life time learning. These adults do not just want to sit but want to be out in the community participating with others their age. The non verbals, who often have bodies that betray them, really do want to participate and enjoy life just like anyone else. Thank you for bringing attention to this important concern.

  2. We need to work together to actually implement such a lifestyle. I hope to be in contact by email to start to try to do so.

    Arthur Golden

    1. Thanks, Arthur, for all your efforts. Little by little, I hope things are changing for the better.

  3. I deeply appreciate your insights and sharings about the non-verbal but typing autistic folks who are precious and courageous, wise, and fascinating. Thank you!

  4. Thank you! Yes, these are some very amazing people we are privileged to know. So much to learn from them.