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 classical 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. A collection of OT/SI photos, displaying Robin’s home therapy program, can be viewed in the slideshow at the end of the article.
Kathleen: Ann, welcome and thanks for joining me again.
Ann: Hi, Kathleen.
Kathleen: 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 how occupational therapy and sensory integration techniques have impacted Robin’s journey.
Ann: I’m up for the task. I’m a firm believer that OT/SI was very critical to Robin’s progress.
Kathleen: The chapter in your book regarding OT and sensory integration shows how involved you were in every aspect of Robin’s journey to independence. From your determined research for meaningful therapy options to the reading of A. Jean Ayers ground breaking book ‘Sensory Integration and the Child,’ to turning your home into a virtual OT therapy facility….you basically obtained an ‘informal’ PhD in all things sensory. And what was further amazing is that you did this even though many ‘professionals’ in the field of education warned that at age 7 (I believe?) she was too old for sensory integration to make a significant difference in her quality of life. I know that that took place a few decades ago, but I still find it shocking.
Ann: Oh, Kathleen, I think that’s still happening today.
Kathleen: I find that appalling….but I don’t want to bog down the conversation. I am so thankful that parents and professionals in the field of occupational therapy are becoming more vocal and visible in the autism awareness community.
Ann: I agree not to dwell on the negative – parents just need to be aware that OT/SI directly relates to their child’s potential and it’s important they educate themselves. There are many how-to books available today but the best basic knowledge still comes from Jean Ayers book, “Sensory Integration and the Child.” That is the SI bible.
Kathleen: Oh I definitely agree. I did an independent study at Children’s hospital in Cincinnati a few years ago, and the OT who was working with me used her book as the only text. There are a few good OT/SI books for parents on the market, such as ‘Raising a Sensory Smart Child’ by Lindsey Biel and Nancy Peske, but the theory behind the practice is completely laid out in the Ayers book.
The amount of detail you included about Robin’s progress, and lack thereof, after particular therapies will, I’m sure, be a wonderful resource for parents. One of the greatest gifts you bring to the autism conversation is your focus on every little positive gain and not giving attention to those things that either did not align with what Robin needed or took longer than one might expect to show results. As long as there was any measurable progress being made…you stuck with it. You were practically a machine in that respect!
Ann: After reading Jean Ayers book, that gave me something to focus on outside the school system. I had already been dancing and playing music with her when she was an infant but now I realized movement and organizational skills were much more serious and needed to be an automatic reaction in her brain to the world around her. Robin was now organizing things in her environment, thus, she ran and was stuck in her world of autism.
Kathleen: If you would, briefly outline some of Robin’s sensory deficits and how you came to address them through your home OT program.
Ann: Anyone touching Robin got a response of a reactive screaming, continual, until we stopped touching. Admittedly, I think her response was easier to observe than most children with autism. Holding her firmly, I know now, was easier for her to accept touch. The OT/SI home program for this was to get her used to accepting touch. I started out by rubbing her with different materials (as instructed by the therapist). When she was older, I had her doing different muscle exercises – scooting on the floor, for example.
Robin’s issues were much more than tactile, so many of her home programs involved addressing a cumulative collection of goals. As many parents know it is difficult to get a child’s cooperation and for the parent to keep the consistency of home therapy. I made my home program into a circus and I was the circus master. In other words, I made it fun. That’s very important, I think.
Kathleen: I would say keeping it fun isn’t only important for continuous engagement, but it is important from the standpoint that it fuses the physical experience with the mental or imaginary focus….which is something that is quite important in development.
Ann: Absolutely. The importance of me, the parent, doing this home therapy is that I came to understand how my child learns. Even today, I can see “why” she’s having a particular problem and it relates to SI. I’ll give you an example I just realized in the last couple of days.
Robin works at Publix as a cashier and is very successful. She’s in her own space and people coming at her are controlled by her cashier line. Her job at the YMCA is a little more difficult. She greets people and scans their membership card. Robin is very friendly to the people she knows. They want her to be friendly to everyone. It dawned on me, her problem at the Y is because the Reception desk is not organized and confusing so Robin has difficulty focusing on the customer and being friendly. Now that I recognize the problem, I need to work with her on being more focused.
Kathleen: Do you have any thoughts at this time how you may achieve that goal?
Ann: In SI, that called attention and regulation (an Ayers term). I have a clicker like used in counting attendance at an event. I’m going to have her put the clicker in her pocket and each time she smiles and says hello and have a nice day to a new customer, she will click her clicker. I know Robin so well I know the clicker will keep her focused. We’ll chart the clicks and she will see how easy it is to talk to new people.
Kathleen: So it becomes sensory related behavior modification.
Ann: In this case, yes. For an adult with sensory issues, this is why they fail so many times with employment. No one is trained to see the problem for the individual. Just just see the problem as an employer.
Kathleen: So this is where the importance of regulation comes into play, and particularly the cultivation of SELF regulation. I understand that the support system is extremely important, but is the ultimate goal the self regulating function?
Ann: Yes. It has taken a lot of OT/SI for Robin to get to this place in her life. And, probably her most difficult OT/SI today is the self-regulation. Many “outsiders” just chalk it up to Obsessive Compulsive Disorder (OCD) but for Robin it is her focus and self-regulating. Hey, we’re a far way away from continual running for self-satisfaction in regulating so I shouldn’t complain but I’m not done yet . . . she must have some control, and does, to be doing so well in her jobs and in her community.
Oh, did I mention that I believe so much in OT/SI benefits for autism, that Robin’s sister is an occupational therapist. She has an interesting side to it in the book, under the Sibbling chapter.
Kathleen: Your entire family is simply amazing Ann. I know this road hasn’t been an easy one…but it certainly has brought with it a level of experience and understanding that are not part of typical day to day life.
Ann: Thank you. We just treated Robin like her two sisters. Fortunately, she was our third child. That’s actually very significant for a number of reasons. We knew what the other girls did and what Robin couldn’t do so we did understand child development a little bit. When I found Ayers book, so much made absolute sense to me. Robin had every deficit from auditory, visual, behavior, activity level, disorganization, variety in play activities, clumsy, self-regulate, seeking inappropriate sensory input, etc. She had it all!
Kathleen: One of the stories you tell in your book, is about how at age 26 Robin was still utilizing the therapy swing in your family room to assist in vestibular stimulation. Could you share a little about that and how you came to develop your program.
Ann: I cannot overstress the importance of the home OT/SI therapy being coordinated and prescribed by a certified OT/SI therapist. Robin’s OT/SI therapist and I developed Robin’s plan and challenged her forward at a very slow, consistent pace. I did not just pull ideas out of a hat. OT/SI is developmental and only a professional OT/SI understands that. Notice, I am emphasizing OT/SI therapist. I’ve had parents tell me that teachers and other therapist are able to do this. Don’t do this, you’re wasting your child’s time.
Kathleen: That is very important advice. The strategic use of OT/SI techniques can work absolute wonders.
Ann: Crossing mid-line is just one example that typical people do not see as significant. If your brain does not automatically cross mid-line, your whole development can be at a stand still. Robin couldn’t cross her arm over to the other side to get anything. This shows that both sides of the brain are not working together. Not a good thing. Solving this for her took years.
Kathleen: I’m curious as to how Hemispheric Integration Therapy or HIT is related to crossing the mid brain, and whether the extreme results that people seem to have are connected with this on some level. I’m not implying that it can take the place of OT/SI therapy per se, but I wonder if it would not be a very effective augmentation of therapy applications.
Ann: This is a good example how therapies complement each other. I have seen videos of individuals in HIT and it certainly seems to be helping to address that goal. It also seems to give value to the home program for progress.
Kathleen: I completely agree. There seem to be several extremely effective treatment protocols that can be tailored to each individual child. Which, of course, is always best practice….to teach to the individual and their strengths rather than lamenting over the lack of ability in a certain area.
To close us out regarding OT/SI Ann, what are some tips you would give to parents of newly diagnosed individuals on the spectrum regarding the cultivation of their SI program? What pitfalls would you like them to be aware of and what proactive steps would you suggest?
Ann: I left out the oral part of OT/SI. Some children will only eat soft foods, or specific food groups. SThis is when many parents start researching or doctors recommend OT/SI and they seek out the therapy. However, parents must understand that OT/SI is much more than just one area. Our sensory avenues affect everything we do. Of course, the younger you start, the better but it’s never too late. Parents need to read Jean Ayres book. From this they will understand their child’s needs and seek out the therapy.
Kathleen: That is a great recommendation and I couldn’t agree more. A.Jean Ayres was the pioneer in the field of sensory integration and her book can be found here.
Thank you so much Ann. The next time we come together I would like to talk a bit about Robin’s experiences with speech and language therapies.
Ann: Sounds good. See you then!
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:
Ann’s Book on Amazon
And at Ann’s website:
Autism: Believe in the Future