Monday, September 3, 2007

Conflicting reports

Yesterday I was listening to “This American Life” on NPR, and they had a segment called “Hit me with your best shot”.  A family spoke about their decision to put their child, who has autism and is rather aggressive in his interactions, into an institution.  What made listening to this particularly poignant for me was the fact that I was on my way to visit my friend  who has autism and who has lived in an institution since he was a youngster.  

I’ve always been anti-institution on principle- even though I’ve worked in one for 19 years.  To me, institutions are not a good place for people to live.   At the same time, I struggle with this belief, because, sadly, for some of my clients, living in an institution has been better for them than living with their families.   Worse, a lot of the folks we send out to the community to live in group homes have ended up coming back, often not in great medical shape.

The other thing I’ve started to think about is that there are a lot of people living in residential facilities who seem to function better when there are a number of carers involved.  I don’t mean that someone should have a different carer every day.  I just mean that people with a lot of needs that aren’t being met (sometimes- maybe a lot of times- because the folks supporting them can’t always figure out what those needs are) tend to act in unusual ways.  Dealing with unusual is fine if you are a carer and you have a lot of other people to rely on (not that staff in institutions get all the emotional support they need to do their jobs, but at least at some point their shift comes to an end and they can go home).   If you’re a parent (or parents) then it’s pretty much you.  All the time.  And it’s scary when your kid is freaking out and you don’t know what to do.

I’ve had that experience with my friend who I visit at the institution.  He and I often take drives together.  It’s something we both enjoy.  Sometimes we get out and take a walk or go to the library or buy vegetables at a farm stand.  On occasion, when he gets out of the car he won’t get back in.  At all.  When I’m 15 or 20 miles away from his home and his staff that’s a terrifying experience.  He’s very strong when he’s decided not to do something.  He’s not mean about it- justextremely resistant.

Yesterday, as I was listening to this family’s experiences, I wondered if there’s something to be said for out-of-home placement simply because the people doing the care-taking are not so emotionally involved.   Autistic people are so sensitive to the feelings of people around them, and I wonder if that sensitivity makes it harder to deal with parents who, rightfully, have a huge emotional investment in their child.  

Interestingly, also yesterday, someone in an email group which I belong to sent along a link to this article: “Treating those with autism like [competent and worthy human beings] shouldn’t be a radical notion”  The article addresses, among other things, the issue of movement differences and challenges experienced by many people who are on the autism spectrum and how, often, the inability to organize one’s actions have lead to incorrect assumptions about intelligence and intention.  Thanks to the use of alternative means of communication, there are people who are now able to convey their frustration at being unable to control their bodies and at being misunderstood.  

Another very important topic which is touched on in the article, probably more gently than it needs to be, is the abuse of people who have disabilities.  Abuse has a profound effect on everyone regardless of whether the person has a disability or not.  Sadly, I can’t say that abuse happens any less when people live with their families than it does in an institution.      

So I’m left without any answers (as often seems to be the case) and a lot of thoughts and uncertainties.  I did talk with my friend from the institution about the family and their final decision to institutionalize their son.  My friend doesn’t use any speech at all- in fact, he’s generally silent.  He does have a special sound that he makes which sounds like a cross between clearing his throat and getting his nose stopped up, and as I asked him what he thought (because I always ask him what he thinks) he responded with a lot of his sounds. 


Prowse said...

Hi! I've just started reading your blog from the beginning. I'm a music therapy student from Wisconsin.

I noticed that in your fifth paragraph you mentioned how people with autism are very sensitive to feelings of people around them. I had the impression from other sources that it was the exact opposite. Can you elaborate what you meant?

I've really enjoyed reading so far. I'm trying to get an idea of what it is really like to be with clients seeing as I've only worked with groups so far (dementia, youth delinquents, and jail adult anger management).


Roia said...

Hi, Jessica. That's so nice that you decided to read through my big long blather. Thank you.

It's a common misperception, I think, that folks with autism are not interested in or sensitive to the feelings of other people.

I'm visiting friends for the weekend, but when I get home I'll look around for a bunch of resources.

Aside from many experiences as a music therapist where it was clear that my state of mind was affecting my clients' mood/behavior, I have found the best place to learn about people on the autism spectrum is from people who are on the autism spectrum. The internet is full of wonderful blogs and websites written by people who have a first-hand experience of autism.

A great place to start is at the website of my fried, Bill Stillman: When I get home I'll try to find some other useful things to read and post them.

Thanks again for reading! And good luck as you grow into your music therapist self.

Prowse said...

Thanks so much! I'm excited to read more on the topic. I feel like there's so much to learn from other people, but I don't really have many mentors who have worked with clients.

Take care and I hope the new year brings many great things for you.


Roia said...

Thanks for your patience, Jessica. I hope your new year is starting out wonderfully.

Here are a few books I found (among others) that may be helpful in terms of understanding the perspective of an autistic person (and, yes, I do realize I have a book problem):

1) "Soon Will Come the LIght" by Thomas A. McKean
2) "Autism and Sensing: The Unlost Instinct" by Donna Williams
3) "Through the Eyes of Aliens: A book about autistic people" by Jasmine Lee O'Neill
4) "Demystifying the Autistic Experience: A humanistic introduction for parents, caregivers and educators" by William Stillman
(and, just because I think Bill is such a sweetie)
5) "Autism and the God Connection: Redefining the autistic experience through extraordinary accounts of spiritual giftedness" (also by William Stillman)

In my own work, one particular session stands out in my memory. I was trying to do a session with a rather challenging gentleman who was sitting across from me and using a pen to draw on a piece of paper. The problem was that something in my own life had upset me a great deal, and I was having trouble focusing. My client was mostly focused on his drawing, but he suddenly looked up, saw that I was distressed, reached out his hand and put it over mine and looked me right in the eye with what I perceived as empathic sadness. Then he took his hand away and resumed his drawing.

I'd say that was pretty sensitive.

Other than that I often notice my clients take on the moods of their staff people (staff have mentioned it to me as well).

In terms of mentoring, I'm not sure where you are in your education (just starting out, doing your internship, mid-way), but I found it tremendously helpful to find myself a clinical supervisor after six years of working as a stressed out and uncertain professional. Worth ever penny!

In the meantime, it sounds as if you've had some neat experiences. Did you not have music therapists as supervisors at your practicum sites?