This declaration is a mouth full, but it’s where a parent must start. As parents, we look at our child and say, “no way” yet, as parents, we cannot allow ourselves to think this way. It is important to think positive and never use the word “can’t.” Take it out of your vocabulary!!!

I know most parents have heard teachers and medical doctors, use the standard phrase to them: “You are not accepting your child’s disability.”  Thank God I didn’t. You are your child’s case manager and advocate. Only you, the parent, can have the necessary vision for their child with autism to reach inclusion in adulthood.

Kathleen: So what are you saying to parents?

Ann: What I’m saying to parents is that “you’re not done yet.” You keep chugging and chugging like in the children’s book, “The Little Engine that Could.” Your child needs you now, more than ever, to learn HOW to have a successful transition into their community, thus adulthood. This can mean different things for different people, but learning does not stop at twenty-one years old.

I’m saying your child can STILL learn and you need to be the detective to help them become a part of their community.  It’s a very slow process; however, for Robin, with diet, occupational therapy sensory integration, language therapy, behavior modification, and education in childhood – it all came together for her in her mid twenties. First she got a job bagging groceries and soon after she started the Gluten-Free Casein-Free Diet and three hours of language therapy a week. To me, the growth in her development, was unbelieveable!

Admittedly, at this point in Robin’s life, her mother (me) became the problem. I didn’t know HOW to change to allow Robin to mature.  I needed to learn HOW to treat her as an adult, not my child. I needed to do this and still be her guide and teacher, even in adulthood. This has not been easy. It’s been like starting all over again.

Kathleen:   Perhaps adaptability is the ultimate lesson here. For growth, from the perspective of parent as well as offspring, the ability to change is key to  optimum potential.

Ann:  Yes, the child and the parents need to grow  together to recognize the importance of community inclusion, thus self-determination into adulthood. However, in Robin’s case I had to take the lead.
Kathleen:  You tell the story of a young man, John, in your chapter on the dynamics of independence, that is an eye opener for anyone who loves a person on the spectrum. Could you share a little about that please?

Ann:   Yes, that is a very important realization. As John’s parents aged, they placed John in an assisted living facility (ALF). As long as John’s parents were in his life, everything seemed fine. However, when John’s mother died and his father entered a nursing home, John’s sister tried to continue the family contact with John. The ALF taught John that true independence is separation from family and that meant separation from his sister. John’s parents did not set up a family guardianship or power of attorney. Thus, John’s sister has no legal right to insist on being a part of his life.
I worked very hard advocating for John. He is an  incredible person but there was nothing any of us could do.

Kathleen:    It seems that becoming a ‘ward of the state’ is a far cry from actual‘independence’ which, I believe, was the intention. In the following section, you outlined very clearly how you avoided this particular pitfall for Robin.

Ann:  John’s example here is one of the biggest fears a parent has as their adult child reaches eight-teen years old - and the sibblings.
For Robin, when she turned eight-teen, I got full guardianship. I had total control of her. I took away all of her “right” to independence.
With the guardianship, Robin was embarrassed when anyone asked for a signature, because it had to be my signature. People didn’t talk to her, they talked to me (dentists, doctors, etc.). It’s like she wasn’t important.
I had to change that! As I began learning about self-determination and community inclusion, and Robin continued to progress in adulthood, I had her “rights” restored. In other words, I removed the guardianship. To avoid John’s possible realization, we now have power of attorney on each other.

Kathleen:  It comes down to a question of dignity doesn’t it.
Explain, if you would, a bit more of how you had ‘power of attorney on each other’. Clarify that a little for the reader.

Ann:  Sure. I had to “teach” Robin about responsibility and making good decision. I’ve been fortunate because Robin understands she needs help and a guide in her life. She wanted to be her own person. Her “dignity” became my priority.  
We laugh about the “power of attorney on each other” we have. If either one of us becomes incapacitated, the other makes their decisions. In other words, we’re responsible for each other.
When Bob and I are not longer capable, Robin’s power of attorney passes down to her sisters. It is written, by our attorney, this way. It will be automatic.

Kathleen:   Oh what a great arrangement! There is no hierarchy involved in that understanding, just love and mutual respect. Now that brings us to the next section in your book, RESPECT, which is an extremely fundamental human need.

Ann:    It is incredible how, we as parents, are the most guilty for showing lack of respect to our children. We’re so used to being the dominate figure and society follows our lead for individuals with developmental disabilities. WE (the parents) NEED TO CHANGE.

Respect means including our child in conversations, particularly about them - even if you know they do not understand. Many people are very uncomfortable around individuals with disabilities. Parents need to change that. In addition, we need to use correct terminology.

Kathleen:  Give us some examples, Ann, of that terminology.

Ann:  I cringe when I see newspaper articles . . and research papers . . . refer to individuals with autism as “autistic people.”

Kathleen: That sounds as though these folks are a different ‘species’ doesn’t it?

Ann: Yes. We are all human beings and should be treated that way. What we say and how we say it is very important and is the underlying attitude we have towards all people.
Another funny point here is that we’re all trying very hard to make society realize that everyone with autism is unique and different. Yet newspaper articles, commentators, and researchers still bunch us up as one.! Yes, we all realize there are different types of autism or possible causes; however, no respect as an individual.

Kathleen: That is an excellent point. Respect is universal and individuals, whether on the spectrum or not, need validation. Part of that validation is for others to see their uniqueness and demonstrate that perception.

Ann:    We parents are the ones that have to change this. How can we expect society to see our individuals as included when WE are also still the ones saying, “My son’s autistic.” Your son is much more than his autism. It doesn’t define him. My son has autism. He also plays volleyball and loves red.

Kathleen:   Excellent point. Our words matter....deeply. All of the discussions we have had heretofore lead to adult independence for the individual with autism.

In your section on ‘cultivating opportunities’ you say that you and Bob spent YEARS teaching Robin assertiveness and responsibility.

Ann: We have been very fortunate because one of Robin’s strengths in wanting to please us. I think this relates directly to the positive behavior modification we used.
We learned long ago that Robin needs to keep busy. As with any other child, that’s when she’d get into trouble or start stimulating herself . . . running, screaming, staring into space or rocking. We needed to substitute these inappropriate activities with positive things. Therefore, it was always a challenge to keep her attention directed.
In childhood Robin had responsibilities and she was rewarded (on a chart) when she did a good job. However she always had to be directed because creativeness or assertiveness was not part of her understanding.
As an adult her responsibility was able to grow . It’s pretty “static”. She’s learned well.
Assertiveness, however, is more “dynamic” thinking and that has been a problem.
Assertiveness in making good choices and realizing it is your choice defaults back to her static thinking. For instance, when shopping she always gets something with the Buccanneer insignia on it. Or she’ll wear the same two outfits all the time even though she has a closet full of clothes.
Making decision and choices and learning to think outside the box has been a process. In shopping I will not make the choice of what to buy (most of the time). I stand there like a mannequin waiting for her to take the lead. She’s finally getting it.

Kathleen: Let’s take some of the strategies you used and lay them out here.

Ann:  STRATEGY: Thinking multi-sensory on assertiveness to tackle this subject:  I used grocery store shopping as an example.
I put a round tray on the kitchen table with a small bowl in the center. In the bowl we listed, on sticky notes, all the “staples” she buys weekly; i.e., toilet paper, lettuce, bananas, carrots, chicken, etc. (I was amazed I had to define “staples,” she thought it was just a store.) Then I squirted whipping cream around the outside of the bowl, filling the tray. I then said, the whipping cream is your dynamic brain - these things are your ‘choices’ you do NOT buy weekly. We wrote different things she wanted this week, not easy for her.  It was a lot of fun and she began being more assertive in her choices.  
We still refer to things when shopping (clothes, groceries, household items),”Is this whipping cream?” We laugh and she will verbally justify her reasoning.

Kathleen:   That process certainly IS dynamic. Transferring the concept of ‘something not purchased on a weekly basis’ to a metaphorical item such as whipping cream is really a major break through isn’t it?

Ann: Yes, and these are the types of things Robin still needs to become more self-determined. Actually, Robin’s language therapy today includes Relationship Development Intervention (RDI) and that keeps me on my toes to encourage dynamic thinking.

Kathleen: The positive reinforcement method seems to work well for most people. Employees, students and even when we provide ourselves with positive rewards helps us to focus, maintain consistency and keep our enthusiasm for the task at hand.

The last section in the chapter on Community inclusion takes the path to another level with pragmatic ‘choice making’ which was part of your strategy above.

Ann:   Choice is Robin’s choice, not my choice or her companion’s choice. This is where it’s important for individuals with autism to learn to speak for themselves, appropriately. Again, not easy. I get in a hurry and just pick the item. Or people will say, “Let’s go to McDonald’s” when they should say, “Robin, do you want to go to McDonald’s or Wendy’s?”

Making good choices, being assertive and understanding responsibility has lead Robin to the person she is today. Community inclusion leads to independence and self-determination. I had to make opportunities for her to realize this was important in her life.  

Robin’s life today includes friends and community. Admittedly, driving has made this much easier for her. Besides employment she plays volleyball and is on a swimming team, weekly. She goes camping (this picture is with her boyfriend), has holiday parties (Dane Edna on Halloween), attends conferences (even with a broke leg) and enjoys socials with friends. All of these decisions are Robin’s decisions.

Kathleen:  Beautiful job laying all these subtle issues out for us Ann. The next time we come together, let’s take a look at “Independent Living”.

Ann: Sounds good.