Wednesday, September 2, 2009

A family's journey to understand Autism.

This post was inspired through a book I recently read called Look me in the eyes: my life with asperger's written by John Elder Robison. It is a fantastic book journaling John's life from childhood to adulthood and how he survived for 40 years without knowing he had Asperger's Syndrome. It is an amazing book and one that would recommend to anyone who needs or wants more information about autism. Here is our own family's story about autism and stretching beyond are own understanding to help a family member.

Living without a diagnosis

During 2002 to about 2007, I had the wonderful opportunity to have guardianship over my older brother. For years, our family knew that he had some communication shortcomings and repetitive behavioral issues that never seemed to be corrected despite being addressed in various forms. My parents were saddened at every turn as their hopes for this job or that friendship came crashing to a halt. It was assumed that he was just being difficult, but a family friend gave my parents some insight that encouraged them to bring him in one more time for some more specific testing.

After 30 years of misdiagnoses, our family was told that he had been living with autism. His diagnoses involved certain aspects of Asperger's Syndrome. Since all of his behaviors did not fit into one box, we were told that his form of autism was a very high functional form, known as High Functioning Autism. I felt a huge sense of relief for him and my family, because now we had a diagnoses and knowledge. There is nothing more heart breaking than trying to find help for someone, when you don't know how to help; and when agencies that are there to help, won't or can't, because they don't fit into their criteria for support.

Big Changes.

It was evident that his current situation was hurting, more than helping him. He had already had to move back home, and with money issues, and with no work; he needed a change. This is when my parents moved my brother to Utah and into our home, so that they could take a long retirement trip and serve a mission for our church. It didn't hit me how much help my brother needed until he began living with us. It was clear that he wasn't functioning well, was confused easily.

The details:
First, let me start by saying every person with autism is different. Perhaps this won't help you, but maybe it will give you ideas for your own family loved one living with autism. Here are few things that were disabling my brother from reaching his full potential.

1. When he arrived in Utah to stay with us, he couldn't think or act clearly. There were too many things in his life that were disorganized and too many guesses.

2. He had lots of big dreams but with neither a job nor the communication skills to complete them.

3. Easily distracted, he was prey to any telemarketer or computer scam as he lacked the understanding and guidance to say no.

4. He was sloppy, unorganized and had no idea how to maintain his space, let alone his own home.

5. He was side-tracked easily as he had no schedule.

6. He did not know how to manage his money, which often had grave circumstances for the my parents.

I knew that he didn't want any of this. He wanted what he saw everyone else having, which was, a normal life - or what he perceived "normal" to be. It was clear that he needed help, guidance, and he needed, for a time, the freedom from guessing what he should do. He needed a strict schedule, with some instruction, and a reward based system to get him back on track. This was a great realization, but one that I had no idea how to establish for him....until...

A system that works:

I was walking through Target one day. Completely overwhelmed by paperwork for the girl's adoption, and the realization that I had no idea what to do for my own brother. As I walked by the office supply section of Target, I had a very strong feeling that I needed something in this section. I entered the aisle hesitantly and was instantly hit with an understanding of what I could do to help my brother. I picked up a poster board, index cards, index card box, and a permanent marker and drove home with big hopes.

The first thing I learned from my brother was that there were a lot of assumptions. A grown man should be able to organize his time, what he eats, his living space - this was our assumption. It was clear he did not have this concept and that this was what was causing so many frustrated moments for him. Second, I learned that my brother's motivation for learning came from rewards - in his case, money to spend on the things he enjoyed. From here we made goals for him based on the things in his life that weren't going well and this entailed 10 separate goals, each with a small money reward. Once a week, I would interview him and have him read the individual goal and then we would talk about his success or how he needed to improve. All the goals were recorded on poster board, so he could see his progress.

We wrote each goal on an index card with the goals exact description and intent and had my brother read it in the first person - for example: One goal was to Maintain a Schedule. The index card would then say,

My family has made a schedule for me to follow each day and each week. I will follow the schedule. I will ask questions if I do not understand. I will ask my family if I need to change or have an activity that is not on the schedule.

Once he completed reading the goal we would talk about any problems he may have had in following his schedule, or successes. We would then make more specific goals, if needed, to go along with the primary goal. Here were the 10 goals:

1. Maintain Schedule
2. Spiritual
3. Personal Hygiene
4. Trust and Honesty
5. Diet and Exercise
6. Checking-in
7. Cleanliness of living space
8. Feelings
9. Attitude
10. Personal Behavior

Each goal was written on the poster board and index card and detailed based on my brother's needs. There was no questions or guessing as to what he had to do each day. It took a couple of months to have all of these new goals "sink in". He had several set-backs, but after a good six months, and after his routine and expectations were clear - he became more vigilant at completing them with great success.

He was now living on his own. I would make frequent "checks" at his apartment. He was active in his singles ward and his work, for now, was volunteering at our church's welfare centers. I continued to interview him. In 2007, after years of mostly successes he married in the Salt Lake City Temple. He received job training assistance because of is diagnoses and is now working successfully - with a steady income and steady job with people who know his limitaions.

I know that none of these goals would have been a success if it wasn't for his "good attitude" and desire to change. I have detailed interview forms and more information if you are interested. It was a long journey filled with heartache and joy as we saw him succeed and grow into the person he wanted to become.

Do you know anyone on the Autistic Spectrum?
How has autism affected your life?


Heffalump said...

Two of my sons have been diagnosed with high functioning Autism/Aspergers, and my youngest son is being evaluated through the school to see if he is also on the spectrum. I also have a niece who has high functioning Autism.
Autism is very challenging to deal with, but I feel like there are blessings too.

Carolee said...

I am so glad you shared that. I am so impressed with the love and patience you showed your brother and I am so happy to hear he is doing so well.

Lene said...

My youngest is on the autistic spectrum. I really worry about his future. I had him when I was almost 40 and I worry who is going to help him if I am not here.

Melinda said...

I actually don't know anyone with autism. It must be so hard. This is really amazing to read about your brother. I am so happy for him and hope is doing well.

Marie said...

Wow. His progress is amazing. My husband's sister has Aspergers Syndrome too, and I can see so much of her struggles in this post.

Dacia said...

Oh my gosh I love this post. My son was diagnosed with Aspergers and I'd love to see the charts and goal sheets you used. It might be helpful for me to do with my son. He has a really hard time with no routine. Since school has started it's helped a little because now his life is predicitable, but summer is the hardest time for him. Thanks for sharing your story it gives me home for my son! I'm so glad your brother is doing well.