A Very Hard Decision to Make
August 3, 2008 by Kristina Chew, PhD
Filed under Health
Autistic Teen To Violent to Handle: This is how the August 3rd Ottawa Sun describes 15-year-old Ian Reisch, who, his family fears, has recently become too violent in his behavior to remain at home. Ian’s caretaker, 26-year-old Jacob Weare, was left with a broken nose and was bruised and bloodied after Ian “lunged onto Weaver’s back.” Ian’s mother, Brenda Reisch, notes that “despite what she sees as an overwhelming and urgent situation, Ian is still at home, and she’s counting the days until he gets an inpatient assessment at the Children’s Hospital of Eastern Ontario.” Ian has also broken windows in the family’s van and car; his medication has been increased and he is taking it three or four times a day. Says his mother:
“What kind of a life is that, to be locked up in a house. We need a life. He needs a life, too. He needs help. I know this might mean he can’t live with us and that devastates me. I can’t tell you how many times I’ve been in tears.
“I love my son. He’s the most precious thing to me in the world. If this is what we have to do, it’s going to tear me apart, but I know he could potentially kill someone and I can’t put him in that situation.”
I know Charlie won’t, can’t, live with us forever, and I’d hope that when he does leave us, it would be because he’s an adult and it’s time for him move into a supported living environment or group home. Other of our friends with autistic children have placed their children in residential placements; Casdok and Susan Senator have both recently had their sons placed in such settings. Not an easy decision to make. So far we’ve been able to help Charlie at times when he’s been upset (really upset) and, lacking language to express himself, uses his whole body, it seems. I’m not sure what what will or could happen, and am thinking all the time about how important it is to make sure that we can provide the best kind of care and trained staff and living settings, and, too, to keep teaching Charlie to communicate when he’s upset, and to keep being open to ways to help him, and keep him and everyone around him safe and well.
And hoping that Ian Reisch’s family can get the help they need as soon as possible.
When I read stories like Ian’s, it just makes me sad. I know that each family, each person must make their own choices and find their own way, but I am now so hyper-sensitive to “increased meds” ever since our experience with Nik’s SIB’s turned out to be BECAUSE of the meds. There were many, many docs who wanted to throw more meds into the mix to help “manage” Nik’s symptoms. His symptoms were communications and they escalated the longer it took for us to understand; he was trying to get our attention in any way possible.
I am so grateful that we finally figured it out and changed his meds.
Granted, I am talking about seizure meds but they *all* have significant impact on the central nervous system and can create very odd sensations and behaviors. In Nik’s case, we discovered his tolerance threshhold —how much he could handle those odd changes and feelings created by the meds —is quite low. Since we began backing off one med, his SIB’s have gone away. COMPLETELY
I can’t help but wonder; what is poor Ian trying to communicate to those who won’t hear him?
Niksmom wrote: “His symptoms were communications and they escalated the longer it took for us to understand; he was trying to get our attention in any way possible.”
This is, and most likely will remain, one of the most important comments on all of AutismVox.
When an autistic child (or adult!) does not have sufficiently fluent expressive verbal speech, finding, establishing, and making use of a reliable, trusted, and acknowledged alternative mode of expressive communication is Job 1.
I think that the lion’s share of maladaptive behavior in autistic individuals is due to the unavailability of reliable, trusted, and acknowledged expressive speech — to mitigate a source of distress, or to communicate a want or need or fear.
Matthew Belmonte has said that there is no mystery to autistic behavior: it represents the best means an autistic individual has at hand to deal with the situation at hand that he or she is experiencing through his or her senses.
When a reliable, trusted, and acknowledged modality of expressive communication is part of the means-at-hand, the situation changes dramatically for the better.
Little things have a better chance of not escalating into big ones. Big ones have a better chance of not escalating into tragedy.
It can take a lot of work to dig out of a hole dug by entrenched maladaptive responses. But I hope that Ian and others like him find their way to living situations where the resources exist to help him replace maladaptive responses with strengthening and increasingly confident use of expressive communication in whatever modality works best.
I think that finding an adult living situation with the right mix of support is something all young people who can expect to survive their parents have to do, autistic or nonautistic.
Finding a workable mix and transitioning into it while one’s parents are alive and well, and where the transition can involve some back-and-forth between parental and adult homes, as is beneficial, is a great way to go, if you’re blessed with such opportunities.
I hope that transition goes well for Nat Batchelder and Casdok’s son C, and all others going through it.
Making sure that the adult living situation will adapt to the residents’ continued growth and skill acquisition as adults is important too. None of us truly stop all growing and learning at 18.
Each of us, as an autistic individual and family, is going to need a different mix of support. Some of our kids will be able to live in their own apartments, or as housemates in a house which does not have live-in support staff, with varying degrees of external assistance, coaching, or consulting; others will need that constantly present degree of live-in assistance and supervision.
In almost all cases, learning doesn’t stop upon placement: a good placement will involve the residents to the extent they are able in the chores and errands and consumer decision-making involved in managing a household.
It may take my son years longer than it took me to develop routines for keeping a household in workable operating condition, but he will get there on his own time, if he’s continually given the increasing fraction of those responsibilities he can manage as he grows older.
The options for supporting him in the process of getting there should include living situations with live-in support staff, and living situations with external assistance, coaching, or consulting. He will need one combination of these alternatives; other young adults will need different combinations of them. The full range of options needs to be made available as choices to all.
On a different note, many of us with autistic kids nearing the age of legal majority are bumping up against an inadequacy in the law: no alternatives to a system of legal guardianship that rules an individual permanently incapable of managing adult legal rights.
This is wrong on two counts: permanence, and all-or-nothingness.
What is needed is something akin to durable powers-of-attorney, to cover entering into contractual obligations.
Approaching 18, an autistic young adult who is not ready to make his or her own decisions about entering into contractual obligations should be able to execute a document similar to a durable power-of-attorney which will require a trustee (most likely a parent, but succession should be provided for) to co-sign any contractual agreement, with clear procedure spelled out for how such a durable-POA-like document is to be rescinded or modified at points in the future, to accommodate growth and learning and readiness for increased areas of responsibility on the part of the young adult.
Such a document, along with durable POAs to grant parental access to medical, educational, and other records protected by privacy laws (in the US, HIPAA, FERPA, etc.), seems to me to be a much better alternative to legal guardianship, at least as I understand how it is defined, established, and rescindable (if at all) in my own and other jurisdictions.
And of course, full guardianship itself should be revised so that it can be replaced with such alternative measures, once the individual under guardianship has the competence necessary to make such a transition. As I understand most current guardianship law, such a transition is difficult at best. Making that transition easier makes sense, because it will benefit individuals who need full guardianship at 18 but may not, say, at 30 or 40, due to continuing development and skill acquisition as an adult.
Wow, Phil, you raise some really great points that I have not yet had to consider (Nik will be 5 this Dec.). None the less, if parent such as myself wait until our kids NEED those things in place it will not help to bring about any needed change.
Thank you very much for your thoughts Phil.
In particular I thought that this one bears repeating, because to me it is fundamental–
“When an autistic child (or adult!) does not have sufficiently fluent expressive verbal speech, finding, establishing, and making use of a reliable, trusted, and acknowledged alternative mode of expressive communication is Job 1.
I think that the lion’s share of maladaptive behavior in autistic individuals is due to the unavailability of reliable, trusted, and acknowledged expressive speech — to mitigate a source of distress, or to communicate a want or need or fear.”
Ditto what Regan and niksmom said.
Phil, very well said. Gives me a lot to think about. The next 11 years will probably go fast.
One correction I realize I need to make: I should have said “communication” (as in boldface below) rather than “speech”, in this paragraph:
“I think that the lion’s share of maladaptive behavior in autistic individuals is due to the unavailability of reliable, trusted, and acknowledged expressive communication — to mitigate a source of distress, or to communicate a want or need or fear.”
The whole point is to develop alternatives such as keyboarding, sign, and picture-and-alphabet boards if speech isn’t developing or requires too much processing bandwidth, for example under stress.
Relevant to residential care, folks might want to take a look at, and track this bill federal bill in progress,
H.R. 6358 (formerly H.R. 5876)
“Stop Child Abuse in Residential Programs for Teens Act of 2008″
Passed in the US House.
Last Action:
Jun 26, 2008: Received in the Senate and Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
One of the toughest things I have to tell parents is that I cannot share information with them about their children. FERPA regulations and university policies prohibit me from sharing anything about academic progress, classroom behaviors, or information I might have about social situations. I’m powerless… even if the student will fail to assimilate at the university and there was something that could have been done to help.
As long as an 18-year-old student (usually they are 20 or older, with ASDs), refuses to add a parent or guardian to paperwork, there’s no alternative. I have my wife on my forms so she can attend any meeting I might not understand. I realize I sometimes need help relating to the world. Students aren’t ready to admit they need help.
Phil: I thought you knew better than to link living in your own apartment to ability levels, I hope I’ve misread you.
Anyone else: I wish I could explain why the term “hard decision” in these context grates on me so much. Maybe because… I’m not one of the ones commiserating with other parents about placing their children in group homes while not bothering to think of alternatives despite involvement with a branch of the disability rights movement and despite knowing me and so forth.
I’m “just” one of the ones who has had to live every day of my life with the results of such “hard decisions” no matter who made them or how much they cried about it afterwards. Such decisions should be hard, that “hard” part is your conscience giving you a warning. On the other hand, we’re the ones who have to live with the harsh reality of having that decision made for us.
It’s not my abilities that got me my own apartment, I have had to fend off “placements” in group homes, nursing homes, and other institutional situations in both California and Vermont, and I couldn’t have done it on my own.
Where are the parents who worked really hard to get it into law in some places that we have to be allowed to live in our own place with any and all supports necessary to accomplish that? And where are the parents who worked really hard to make that a reality for their children when they grew up? Why do people equate group living with increased support?
Why aren’t people fighting for real accessibility to our own places (with or without roommates of our own choosing, but having roommates isn’t a group home for non-autistic people so it isn’t that for us either), and for agencies to drop their institutional power structures and work for our benefit first instead of the benefit of the agency?
I can’t find many excuses unless you simply avoid noticing my existence and the existence of many other people like me.
Yes, it’s hard work getting appropriate support in place, from an agency that isn’t just a glorified institution. But it’s hard for a very different reason. It’s hard for the same reason it’s hard for the autistic person who gets “placed” somewhere — systemic oppression that ought to be fought tooth and nail, rather than acquiesced to.
It’s not the kind of “hard” that means putting someone in a situation where even the best rarely lacks a major dehumanization factor, where they have to deal with how hard that is, while you’re off getting support from all kinds of people for the “hard decision” of “having” to do this to them.
I’d understand if you didn’t know. My parents didn’t know, we weren’t given any information and there was only a small autistic community at the time. I didn’t even know back then. And much of what happened was against our will anyway (and I understand that, and the nature of coercion, etc).
But you do know. You know me. You know others. You know how many I know. You have access to the information. USE IT, rather than assuming that a group home is (a) non-institutional in nature and usually a good place (or that it’s possible to even tell if a place is good without both living there and having something objective to compare it to) and (b) someone’s automatic future if they’re below a certain ability threshold in certain areas.
I wanted to add to this where I said It’s not my abilities that got me my own apartment, I have had to fend off “placements” in group homes, nursing homes, and other institutional situations in both California and Vermont, and I couldn’t have done it on my own.
(I should also add that I’ve actually had case managers and the like tell me that they’ve never had someone this severely disabled in their program, or someone with this complex a set of medical needs. But I’m far from the most severely disabled person I’ve ever seen in their own place, not by a longshot. One guy I know even got out of an institution by destroying so much of their property they didn’t want to pay it anymore. Turned out he was in pain and couldn’t communicate it.)
Oh also, it’s interesting how little talk goes into what events are making us violent, and how our violence when it exists is assumed to be senseless, not at all related to how people treat us (conscoiusly or unconsciously), or anything like that. Mine was once called the result of something “that resembles septal rage syndrome” and described as “unprovoked”, when the reality was I was justifiably mad (in part about being perceived as having no non-institutional future… hmmmmmm… and I’ve heard that from many other autistic people who became “inexplicably violent” in adolescence, but given that it’s often our families telling us this as much as anyone else, that’s not a topic people like us to discuss) and couldn’t explain why so did the only thing I could. Because that’d veer into really uncomfortable territory for some of the people around us.
Amanda wrote,
Such decisions should be hard, that “hard” part is your conscience giving you a warning. On the other hand, we’re the ones who have to live with the harsh reality of having that decision made for us.
thanks, this reverberates with a lot of decisions and choices we’ve made in the past, and with others ahead in the future.
I thought there was too, too much emphasis on “violence” in the article and no attempt to consider why Ian was doing what he did. I have been wondering if his parents or others mentioned this, but these things were left out of the article.
It is a very very hard decision. I am well aware my son has to live with the decisions I make for him and because of this I took years looking and researching. I wanted somewhere that suited his needs, somewhere he would be happy and somewhere that would enable him to continue to grow. Somewhere with the right ethos, forward thinking and different opportunities.
And as C grows I will continue looking at what are his best options. This home I have chosen is only a stepping stone, as who knows what the future holds.
If anyone hasn’t read Critic of the Dawn, read it. If you haven’t read it, reread it.
What I see in these newspaper stories is “Bruce” all over the place. That’s a large part of the reason I find it so painful to read.
I automatically, without meaning to, just unconsciously, identify with the person being ‘placed’, and I see most people in most reactions to this newspaper story identifying with the parents.
And the newspaper articles want people to.
And they take something out of the core of the other person and pretend it doesn’t exist.
It’s all very instinctive for me so it’s hard to put all this into words, so read the article I just linked.
There is a lot to think about based on the post and comments here. My kids are 12 and 13. The 13 yr old will live on his own and the 12 yr old will need me to be his legal guardian. The next major step will be the high school years and his transition IEP where he will take part as well. Two more years before he goes back to school. For now it is homeschool with California Virtual Academy. He talks of wanting a job, but has a wait still.
@Amanda: you misread me, but I admit it’s easy to have done that.
I said: “Each of us, as an autistic individual and family, is going to need a different mix of support. Some of our kids will be able to live in their own apartments, or as housemates in a house which does not have live-in support staff, with varying degrees of external assistance, coaching, or consulting; others will need that constantly present degree of live-in assistance and supervision.”
“Constantly present degree of live-in assistance and supervision” doesn’t preclude such support being provided in one’s own apartment. I should have made that clearer.
And I wish I could think of a better word than “supervision”; what I was trying to get at was the kind of support necessary for, say, someone experiencing disruptions of attention or executive function that would make some kinds of household activity (cooking, maybe cleaning, maybe bathing, etc. etc.) either dangerous, or prone to consequential perils.
Supervision has all the wrong connotations
.
Yeah, and what you wrote made it sound as if constant supports are incompatible with having your own apartment or house.
Odd to know at 12 whether someone would need a guardian at 18 or not.
I think one can keep hoping and trying to do the best things so that constant supports might not be called for, but as a parent, one has to plan ahead and also factor in change. (All while factoring the reality that parents only get older, and have more needs themselves.)
In an effort to be absolutely clear:
Based on actual experience, with appropriate planning, anyone (without exception) can choose and live in one’s own home, at least as safely as in any specialized group placement.
I am prepared to answer any questions about this statement.
Arthur Golden of Jerusalem Israel
Payne-Christiansen, E.M., & Sitlington, P.L. (2008). Guardianship: Its role in the transition process for students with developmental disabilities. Education and Training in Developmental Disabilities, 42, 3-19.
Other articles on transition, guardianship and self-determination.
Part of Education and Training in Developmental Disabilities Sample Articles from Division on Developmental Disabilities, Council for Exceptional Children