Young adults becoming the Directors of their own treatment

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From Michelle Garcia Winner, who teaches "Social Thinking" skills in San Jose, CA and around the world, link at bottom of the page. She has some very relevant points to make for those who grew up with an IEP and a parent advocating for them. My son was not diagnosed in public school, rather thrown under the bus by the teachers and guidance counselor, but I digress. It is also relevant to him.

It is long but it is important:

Adults: Becoming the Directors of Their Own Treatment Teams and Treatment Plans
Monday, 30 January 2012 13:47
Evolving ideas for working with adults and high school teams helping to prepare students for adulthood

By Michelle Garcia Winner

Many of our students/clients received some level of support through school based 504 plans, IEPs and/or from counselors, psychologists and psychiatrists in their community as children and into their high school years.

Turning 18 years old in the United States results in a person being referred to as an “adult” or “young adult.” This means they are legally responsible for their actions and based on their parents’ decision, they are potentially responsible financially for all of their costs of living, education, etc. However, many parents continue to financially support their young adult/adult children while they pursue post-secondary education as well as assist with living costs if their “children” are unable support themselves. To parents this may feel like their adult-children continue to require extra educational, psychological, social skills and/or life-skills counseling to help them learn to live more independently as an adult. While parents may fund these extra educational/therapeutic adult services, parents are not typically permitted the same direct access to their adult-children’s service providers. Instead it is expected adult-children can independently understand how to utilize the information they are gaining from these treatment services and then directly apply strategies learned as needed across their school, vocational, community or home experiences.

From our experience, this is not the case. As our students transition from high school into and across their adult years, they struggle to direct the teachings and find meaning within the guidance offered by their treatment providers (tutors, counselors, social thinking therapists, etc.) When these adults were children, their parents were often very involved in guiding the treatment team and assisting with the development of the treatment plan and even goal writing. Now, as adult clients, they struggle to find a strong, meaningful voice in their treatment program, which results in weak follow through with applying what they are supposed to be learning outside of the actual treatment sessions, or even fully understanding why they are working on it inside the treatment session. Treatment services may have been established with client feedback working alongside well-meaning clinicians, but there can still exist a lack of clear ownership of treatment goals and related outcomes when our clients don’t realize they are solely responsible for the ultimate destination/outcome.

Federal law requires that students on IEPs in high school be guided through a legally mandated transition plan to start them thinking about life as an adult. A body of research also suggests that helping students develop “self-determination” leads to them making more direct decisions about their treatments, more actively participating in the development of the transition plan, and being a more active participant at their IEP meeting. Actively working with students during high school to be more direct leaders of their own treatment plans is highly recommended. However, while students are still in high school they can’t imagine how they will manage their treatment team in adulthood when the team doesn’t actually know each other!

Many parents of my adult-clients continue to pay for their adult-child’s services. Because they no longer help navigate their adult-child’s actions/decision making they wonder if the treatment is effective. They tend to have no idea what their adult-child is working on in treatment or whether they are utilizing related strategies. Furthermore, other members of the adult-client’s treatment team may not know what other treatment professionals are asking of the client or whether their messages are consistent or conflicting. The bottom line is that most adults may see many treatment professionals but there is typically no “treatment team” in any team-based sense unless the adult-client is enrolled in a specific program that offers coordinated team-based services (e.g., a transition to college program).

Many of my 22-30 year-old clients have multiple treatment service providers, yet these clients have little accountability to each of their specialists. I have yet to work with a client who encourages different specialists to coordinate with each other on the client’s behalf. Seeing this happen again and again, I felt it was important for me to help my clients more actively learn that they are responsible for their own treatment team. This includes how to discuss the services being received, ask questions, seek clarification, share information among specialists, and advocate for what they need to learn. The result is the following long term teaching unit comprised of a scaffold of lessons. Social Thinking treatment, upon which these lessons are based, dovetails nicely with other lessons that may be generated from post-secondary oriented professionals such as special educators/tutors, counselors/psychologists and life-skills learning specialists:

Becoming the Director of Your Own Treatment Team

The following are some ideas we are exploring to help our students take on more responsibility for guiding their treatment professionals (even parents) and using what they are learning more effectively.

A special note to/about parents: If parents are paying for the services and/or the client is still living with the parents, the client signs an agreement giving permission to the treatment professionals to talk to parents with or without the client being present. This allows parents to offer their perspective on how their child is coping and what the client needs to be working on. It also provides opportunity to find out if the adult-client is following through on using his/her strategies outside of the treatment room, as well as helping parents learn ways to encourage the growth of their adult-child. Actively engaging parents and their adult-children to continue to communicate about their work with specialists is a positive benefit for most of my families.

The client completes the following worksheet:

I am the Director of My Own Treatment Team

I am receiving some treatments related to social learning, social emotional functioning and social engagement. I am working to better learn how to coordinate the services I received as my service providers don’t usually know each other and they are located at different offices spread out around my community.

The following points help me continue to develop self-awareness as to why I am working with a specialist to better develop my Social Thinking.

Rate the following skills on a scale of 1-10 (1= strongly disagree; 10=strongly agree):

People think I am friendly; I am good at reaching out to people I don’t know.





People see me as handling my frustrations and anger well.





People see me as being interested in them.





People see me as balancing my talking time well; I show as much interest in others as I spend talking about myself.





People see me as calm and relatively stress free.





I see myself as calm and stress free.





I see myself as being able to make a plan and stick to it to accomplish what I know I need to do.





I understand how each educational or social-emotional specialist I work with helps me learn to better handle some of the above concepts.





We can’t learn everything at once; I understand how to prioritize my goals.





I recognize that my parents and specialists are all people I need to work with to help myself continue to mature and develop more concepts and skills.





In the next year I would like to help myself be able to accomplish the following:

1.

2.

Specialists (educational, counseling, psychiatrists, etc.) who work with me are all people I continue to welcome onto my treatment team. While they may or may not know each other, they are part of my team because they all work with me. To help me benefit from their different roles and advice, my job is to help coordinate how they assist me.

Below are listed the names of each specialist I work with and their specific role in helping me learn new information. (Include counselors/psychologists/therapists, tutors, job coaches, and other people you may work with at your university/junior college/transition program to coordinate your learning needs.)



Name of each specialist on my treatment team




The specific role of the specialist in my life






































If my parents are still actively part of my life (I talk to them regularly, and/or I live with them, and/or they pay many of my bills) then they have a role on my treatment team as they continue to encourage my growth. I describe their role as:





As I make progress related to my treatment program, I recognize this impacts my parents (family) in the following manner:







I would like certain members of my treatment team to know what others are working on with me, because the treatment ideas among this group overlap. Below I have described this information.





I can initiate this discussion with them by explaining I think it would be really helpful to me and my specialists if they knew what I was working on with other members of my team.



It may help me to plan which day and time I want to have this discussion, to help me follow through with getting it done. I can put a reminder in my planner. My inner coach can also remind me that going to these different appointments and sharing this information with my specialists gives me a forum for discussing conflicting information and helps my specialists know the many different things I am working on in any given week or month.





I will appoint one person of my treatment team to help me with this coordination (likely the person who is having me fill out this worksheet). I will let that person know how I am doing with communicating with my various specialists in a more direct manner.


Note from Michelle about the next section:

The following worksheet, Goals and Action Plans, was designed to help my clients work toward achieving their goals by learning to clearly define what they are (physically) planning to do. After completing this worksheet, they then actively define their action plans for the week and describe how they are going to take data on each. While the following information does not list the different data sheets we are developing, hopefully it helps you, the specialists, seek more clarity with your clients to help them understand their treatment program and their responsibility to it. Specialists are not responsible for changing their client’s behavior, perceptions, or ability to function. This responsibility lies squarely with the client.

Carrying a Toolbox: A Useful Analogy

When clients were children, their parents/teachers carried the tool box, opened it, took out the best tool (strategy) and not only taught children how to use it but told them when to use it.

By adolescence, students are expected to carry their own toolbox but parents and teachers still remind them of their tools and continue to advise them on how to use them.

By adulthood, students/clients are now expected to carry the toolbox, open the toolbox, select a tool/strategy and use it without guidance from specialists or parents.

A final word on the toolbox: The goal of any specialist working with an adult student/client in a treatment program is for the student to take control of his/her toolbox. A specialist is a tool in that toolbox, one that the client needs to learn how to better utilize in combination with the myriad of strategies the specialist teaches. For specialists to do their job well, they need to avoid doing the thinking and work for their clients. They do need to work with clients to figure out how their clients can take data to assess their use of the new skills/concepts being taught (e.g. data to see if they are using their tool box effectively).

The information provided here is not all-inclusive but is intended to help students explore their own learning and escape routes and develop further insight into becoming more accountable to themselves!
Goals and Action Plans

Goals are things we THINK about to move our life in a different direction.

Action Plans are things we DO to help ourselves accomplish our goal.

For example, if I talk about wanting to “make friends” or “get good grades” I have stated some goals. Stating these and then doing nothing measureable to work on them is called “talking the talk.” To be honest there are times when we all “talk the talk,” – that means we talk about more than we actually will accomplish.

However, for the goals we truly want to accomplish we have to do something very visible that helps us meet the goals. We have to put a set of actions in motion, we call them “action plans,” that we can define and carry out to meet the stated goal. When the action plans are carried out we call this “walking the walk.”

In treatment sessions we need to focus on both the thinking and the doing (setting clear goals and developing the related action plans to carry them out).

As you likely realize, some goals are harder to achieve than others. Given that humans, for the most part, don’t change their thinking and related behaviors easily, your job is to try and figure out goals and related action plans where you can learn to both “talk and walk” to help you move your life in the direction you desire.

Finally, think about the fact that some goals are larger than others. Large goals may be referred to as “long term goals” and the smaller goals we work on to meet the larger goal are called “short term goals.”

Changing our thinking and our actions (behaviors) means we have to begin by organizing how we are going to approach this. We are going to study how to help ourselves help ourselves! We’ll also learn the barriers or roadblocks our minds throw at us to interrupt this process!

Goals and Action Plans: Creating my own treatment plan

Long term goal:

3 or more short term goals that you have to accomplish to meet this long term goal:

Pick one of these short term goals and develop a set of action plans to help you accomplish this short term goal:



List action plans (which are typically sequenced) to help you move in the direction of accomplishing this goal. (See the diagram below, with three columns.)

In the Action Plan column write down each of the sequenced behaviors you will do to help you accomplish the short-term goal.
In the Supporting/Inner Coach column describe what you will say to yourself (your inner coach) to encourage you to accomplish this action plan even if it seems to be a pain at the time you need to get it done.
In the 3rd column, Self-defeating Comments, list the actual things you are likely to say to yourself to make you avoid doing this action plan. These comments often set you up for making excuses which sound quite realistic. This column is just as important as the other two, as it describes the ways you think that make you stop focusing on the action plan and related goal when you face a difficult moment. This becomes a road block or barrier to your own success.
In the 4th column write down when and where you will carry out this action plan to work toward your goal.



Action Plan


Supporting/Inner Coach Thoughts


Self-defeating Comments (excuses)


Time and Place to Accomplish your Plan
The next time we meet we can discuss this chart, and evaluate how well you were able to keep yourself aware of your action plans related to your short term goal, and discuss if this system needs to be tweaked to help you continue toward your own success.




what-is-social-thinking/michelles-blog

I don't know that I really agree with most of that. I mean for one neither one of my parents really tried finding out what was wrong with me as a child, they just either figured it was something I would grow out of or maybe I was good at playing it off like everything was fine can't really say. But lets just say I never got treatment.......so I never got to know any psychiatrists, psychologists or specialists really and never had any support to help with anything I struggled with. I ended up blaming myself for everything far too much and pushing myself beyond what I could really handle because there was really not much choice.

As an adult I cannot imagine my parents being involved enough in my life to be guiding me in any sort of treatment plan, my mom would not be helpful for this and though my dad is a bit more understanding he's got plenty of his own problems to deal with. Also I cannot imagine letting any mental health professionals or psychiatrists run my life to that extent. I can understand parents being concerned about their kids becoming adults especially if they have a mental condition but an adult who understands the are an adult should certainly be the one to decide what they would like to do as far as treatment.......it should not be forced. So yeah I imagine there are people that have a different relationship with their parents and a more supportive family situation in which case what this post describes could probably be helpful.

Also the theraputic approach looks like CBT to me, which is not something that's ever seemed to help me.....I've been in therapy for depression and they tried the whole 'change your thinking/behavior approach.' which seemed to help for a while but once I realized my situation was not improving it kinda wore off a bit and just enforced the idea of trying to get better only to have things continue getting worse. CBT does help some people though, but in my opinion its more helpful for less complex issues......I mean I feel like my mental state is so complex there is no simple way of changing it. I mean sure I can change my thinking but it's kinda pointless if it does not actually lead to any change of feelings.

So this could be helpful for some but there is never a one size fits all approach with things like this.

From my own experiences, I agree with what Sweetleaf has written.

I too never got any support to help with anything I struggled with - my parents just acted like I was fine and concentrated on my grades - even though they knew otherwise. But that's off topic.

My parents don't understand/accept my problems so would be no help whatsoever in guiding me in a treatment plan. I also didn't find CBT to be helpful to me, it was too rational, and emotions aren't rational.

I think the relationship of the adult-child to their parents has to be a good, supportive, understanding relationship for this to be effective.

I think in the US the overall problem is that at the age of 18 kids are suddenly adults. I think for ALL kids some kind of transition is important. Schools should be teaching real world skills along with academics. Skills like handling a checking account, paying bills, planning meals and shopping lists are skills that most kids are not taught by their parents or in school. I just completed a human development class and one of the topics was the transition to adulthood. I wrote about how I would think it would be a good thing for kids in high school to partner up with another classmate and play virtual house where they had to plan for emergencies, plan budgets, pay bills, buy food... all the stuff involved in normal life but in a simulation game. I think a similar type of set up could be implemented for kids with disabilities that are going to require ongoing care from different sources. I think they need to practice things like setting up appointments and asking people to help them with something. Parents and schools are supposed to give kids the skills to live on their own. I know that living on their own is not always possible but for the majority of people it is.

there was a story on NPR's This American Life a few months ago about a mother and her autistic son. She gradually worked with him to get him to live independently because she was getting older and she was worried about the welfare of her son after she died (I think he was an only child). Eventually she bought a small house across the street for her son and now he lives by himself with a little help.

WP is a very diverse community, there is no doubt about that, and all comments are welcome. That said, I posted this in the Parents forum for a reason, it is directed to parents who have diagnosed kids who will become young adults on the spectrum.

The author of the post, Michelle Garcia Winner, is addressing a very specific audience of parents and teachers who already know and accept that their child is ASD. Most of these kids got an early diagnosis.

ASD did not enter the DSM manual until 1995. I am pretty certain, Michelle is now seeing a young generation that has had social skills therapy, IEPs, accommodations all their life and their parents have been running the show. She wants them and their parents to start thinking about how is my young adult going to handle their own support system once they turn 18.

I agree it is tough to grow up without this support and/or have parents who are in denial about your diagnosis.

However I really wanted the parents who post here, who have a kid who is maybe five or ten years old, to start thinking about this aspect now, and looking further down the line.

I am surprised none of the parents who post in this forum responded though they are probably much too busy fighting for their kid's IEP and then making sure the IEP is actually implemented in the classroom. And I am dead serious about that, it is a full time job making sure your child's needs are met in the classroom.

Michelle is a very practical person, hands on, lets break this socializing thing into tiny steps, and teach how it works. She is now seeing young adults who's whole support system is going to go sideways once they turn 18, unless the young adults have a plan. She is presenting people with her idea of a plan and it is not a bad one either.

Thanks for posting this. You are correct that it's helpful for parents who are very involved with their ASD kids. Similar to what you mentioned, we are too busy either fighting for our kids IEP, or homeschooling them to comment. It does give me things to think about teaching my son.

You are most welcome Aann.

I have found WP to be a very diverse group and all comments are welcome. It is very informative for me to hear from everyone. To know how different people respond. It helps me understand what my son might be thinking or feeling.

He was not diagnosed in grade school, when he should have been. I would get bits and pieces of feedback from his various teachers. But no one put the pieces together, ADHD was the only consistent trait and that depended on what kind of teacher he had each year, so I did not take it seriously.

He is very smart and while very shy, he presented almost like an NT. He was socially awkward but I thought this is because he is an only child, with no siblings to play with and fight with and scramble for his place in the family.

Long story short, we are now playing catch up with him. He quit College, worked in a restaurant for a year, then quit because he couldn't deal with the social issues. Which he would not admit to until much later.

He has spent the last six months holed up in his room on his computer.

He is finally on an anti depressant (Zoloft) that is working for him, the change in him is remarkable. He is working with an educational therapist who is teaching him social skills. He is now going to have a weekly activities schedule, and I see some rough sledding ahead but it is all to get him to be a self sufficient, independent adult.

Had he been properly diagnosed as a child, things would be very different for him right now.

All I can do is shrug my shoulders and say a platitude like, 'the Lord works in mysterious ways', or substitute the word 'universe' if you like.

I find the internet to be a double edged sword and at times I think some of the 'stuff' that has come from it is appalling to say the least but this is use of the internet at its best.

I appreciate the WP community!