Ann Millan, author and autism advocate, has some very real and meaningful understandings of autism spectrum. When Ann’s daughter, Robin, was diagnosed with autism in the 70’s, autism was an extremely rare disorder. There were no flurry of organizations, groups or social networking sites for support. Therefore, the Millan family’s path to independence for Robin is all the more astounding.
Robin is an engaging, talented and caring woman who holds two jobs, drives her own car and owns her own condo. The diagnosis of classic autism is still there, but it certainly does not have the power to define who she is. I am so pleased to be speaking with her mother, Ann, today.
Kathleen: Ann, Welcome and thanks for joining me again. Your book, Autism: Believe in the Future-From Infancy to Independence is an amazing book. Not only do you share your personal family story, but you give a complete description and road map for families to follow who are wondering where in the world to begin charting a productive path for their affected family members.
Today let’s talk a little about the chapter in your book .....‘ Moving Out: Independent Living’.
Ann: I’m not sure the reader is going to want to hear about this as a reality, but let’s go.
Kathleen: In light of that, perhaps it is all the more critical to address this topic.
Ann: I agree. This is the ultimate challenge for parents who have a child with autism, in fact, any developmental disability. I only considered independent living/supported living because I had state services for individuals with developmental disabilities, and I had built up the confidence to trust them (which was an accomplishment). I did it for Robin!
Kathleen: In your book, you state that you, Bob and Robin took a long walk and discussed the option for Robin to live on her own. What prompted the conversation and how did you all realize that the time had come to make a decision?
Ann: Robin was progressing beyond our visions at twenty-eight years old after she started the Defeat Autism Now (DAN) protocol and three hours a week of language therapy. She was promoted to cashier and got her driver’s license during all this growth. The natural transition would then be living on her own. Robin’s state support coordinator is the one who kept encouraging me to consider it.
It’s not always easy for Robin to understand concepts and cause and affect. She’s more of an “in the now” person. This is why we had to help her realize the importance of making this serious decision and us helping her in this next stage in her life. The biggest thing I am thankful for is that she only lives two miles from us.
Kathleen: Now, if you would Ann, talk a bit about the supported living coach that assisted during the early phases of Robin’s transition.
Ann: Supported living coaches, in fact disability providers in general, do not understand the uniqueness of autism. They treat all disabilities the same. Because of this, we kept having disasters in finding the right person. A friend stepped in as an emergency provider . . . which lasted two years. This gave Robin the time and space to “learn” how to handle her new-found freedom.
I had no idea independent living skills were just as difficult to learn as reading or math. Again, when that realization hit me, Bob and I had to take a deep breath and accept the challenge.
Kathleen: Robin and your family overcame many challenges during the early years of Robin’s independent living. You cover the pitfalls with some detail in your book, but which would you like to stress most within the context of this article?
Ann: I am so proud of Robin. She is not depressed, living in her own shell or surviving because of her compulsiveness. To accomplish this, it has taken her five years to begin feeling comfortable and confident living on her own.
Throughout Robin’s life, we’ve had a good relationship. That was and is critical entering adulthood. Having said this, Bob and I have been Robin’s life-line for independence. She trust us to rescue her and to respect her feelings and choices.
In the early days, if Robin was confused or frustrated, she displayed this through inappropriate behaviors that others didn’t understand, like frustration and anxiety. Robin needed good role models in her providers. We made sure she got this.
I’m a firm believer that most individuals with autism need to keep the structure and boundaries of their childhood to be successful at first with independent living. What I’m trying to say is that independent living has so many choices that a person with autism (particularly Robin) had difficulty. Yes, she led a sheltered life! I see girls walking the streets in the middle of the night or boys being influenced by so-called peers. Bullying or abuse can easily become a very serious problem for individuals in independent living.
Kathleen: “Ode to my Staff.” Talk with us a bit, Ann, about Robin’s support staff. If only to have the section in your book containing sample pages from “Ode to my Staff” that you created for Robin….it is more than worth the price of the book.
Ann: Kathleen, cold chills are running through me as you ask that question. I’m thinking of that just being another book. Robin deserves respect, dignity, happiness, and all the other things people have in life. Reality is that I cannot protect her for ever.
Ode to my Staff is, in Robin’s words, what she wants others to know about her personality, what upsets her and what she needs in her life. Robin is verbal but she still cannot express her feelings verbally. They are expressed well, however, in her body language. To give the reader an idea, I’ll list a couple here. I think I have about twenty-five in the book.
- I expect you to be totally honest with me at all times. (This might sound silly to some, but I was shocked how some providers are not honest.)
- Do not enable me. I can do it myself, but I may not realize I need your support to make that happen.
- Have patience with me, and give me time to complete a task. In other words, don’t rush me.
I think this should be a coffee table book and required reading for people working with Robin.
Kathleen: I think this is a great resource for any human service related professional. Regarding honesty...I understand completely. When I know that trust has been broken, I feel very uncomfortable around that individual and basically on edge.
It is a very fine line as well between enabling and supporting. That particular dance is very subjective and being intuitive enough to pick up on the individual with autism’s unique needs is not a skill/talent that everyone possesses.
Patience would eliminate many problems in this particular circumstance as well as all others. I hope you follow through with the thought of publishing “Ode to my Staff” Ann. It will be a wonderful resource.
Ann: I agree. You know, Kathleen, because I was so determined in those early years, Robin now has good providers and none of them are an issue today. HOWEVER, when a new person enters Robin’s life, we could easily be back to square one just because of honesty and patience and respect. And I may not be there anymore.
Just to give an idea of how Robin used to be. If a provider was five minutes late, Robin wouldn’t let them in the door! No joke. I’m sure other parents can relate to this. Static, static, static, don’t break any rules. Fortunately, we can laugh about this today because none of it happens anymore.
Kathleen: There is nothing like shining the light of clarity. You’ve provided a checklist for clarity into the ‘being-ness’ of Robin. When parents understand to do this process for their children, I can only image the world of discomforts their children and their entire families can by pass.
Ann: One other critical point: NO ROOMMATES, unless it’s a good friend. The state programs will try to “pair” people together - that’s really disaster for some. Fortunately, for Robin, I knew she was her own best friend. Her roommate is her cat. For her, that works.
Robin needed her own space, not the anxiety of another person. Yes, loneliness is a serious issue for independent living; however, we solved this with Robin’s social group, Mainstreamed Adults Sharing Hope (MASH). They, plus her work and exercising at the YMCA, keeps the loneliness in check.
Actually for adults with autism in independent living, I think loneliness becomes the major concern. Besides employment, this needs to be addressed for the individual. For all of us, in fact.
Kathleen: The social aspects that you outline in your book..... socialization, employment and community inclusion....become tools for creating an environment of support. It sounds like you have offered a practical antidote to the ‘loneliness’ issue.
Ann: Yes, I believe, for the best possible success, these (employment and socialization) need to be in place before independent living, if possible.
Just recently, a family moved into Robin’s quad with their daughter who just completed school. She and Robin have been “hanging” at the pool, going for walks, etc. this summer. Just last week, Robin invited her down for games and dinner. Robin’s companion was there for Robin to feel more comfortable “hanging”. Robin was so excited the next day sharing with me.
Don’t get me wrong, Robin has a lot of friends in her complex but they are just “passing” friends. She needs to develop close friendships that are not in her MASH social group.
Kathleen: This brings us to ‘balancing work and play’...and Robin’s use of the cell phone as her ‘life line’. These are different times that offer so many technologies (cell phones, iPads, etc, etc) that augment support systems for all people with and without disabilities. It really is amazing.
Ann: Oh yes. I would never have considered independent living for Robin if cell phones were not affordable and realistic. This has given her the confidence to accept challenges and to know someone is their for support.
The bottom line for Robin, that is so wonderful, is that she wants and is succeeding at everything she does; however, she is smart enough to know she needs help.
Kathleen: Yes, this is where support enters the scene. I say, “enters the scene”, but you have had a support team assembled for Robin her entire life. The players may change, periodically, but support has always been there in full force. Would you say that therein lies the secret to much of her success?
Ann: Yes. As I said before, Robin has limited language skills, even today. This includes a limited vocabulary. This is why her language therapy is so important. Not only does she continue to progress but it also keeps her stabilized, along with her DAN. Add to this the fact that Robin’s intellectual limitations also cause her problems.
I often tell parents who just want a companion for their adult child with autism, “have you ever thought about language therapy?” I just get a “stare” because they thought it was just for pronouncing words. Language therapy today includes communication and Robin needs to improve her communication skills. The companion was secondary. Later we added the companion to help her feel comfortable developing friendships. It’s all a process.
Kathleen: It seems to be about ‘ongoing education’. Everyone continues to learn and the proper supports are an avenue by which individuals with autism can lead the most productive, independent and HAPPY lives possible.
I love your story Ann…and the openness you and Robin share it with. For everyone who cares about someone with autism, thank you both.
Ann: Kathleen, among the many reasons I wrote this book is for parents, governments, and community to realize that Robin’s program 1) language therapy (3 hours a week), 2) supported living coach (5 hours a week), 3) companion (4 hours a week) is cheaper than an institution or even a group home requiring round-the-clock care. And, her support hours and costs go down every year, instead of up (as in most cases).
Kathleen: Natural, normal living with necessary supports in place for success…this sounds like a win, win, win to me.
Ann: Yes, and it needs to be available for those individuals with autism who need this service. Today there are ten thousand adults with developmental disabilities in Florida on a waiting list for services. Some states have nothing. This must change!
Kathleen: We’re reaching critical mass. Now is the time.
The next time we come together, let’s take a look at “The experience of parenting a child with autism”.
Ann: See you next week.
For more insights from Ann and helpful autism information, look for our next segment of:
Asking Ann About Autism
Ann’s book can be found in bookstores and online at:
And at Ann’s website:
|< Prev||Next >|