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 .....‘Education’.

Ann:   Sounds good. I’ve been gathering some pictures and a video.

Kathleen:  Wonderful. In your book you begin the chapter on Education with ‘the problems of public schooling’. Before we delve into that, would you say that the difficulties you address are specific to Robin, or are these generalities that apply to children and adults with autism across the board?

Ann:    My experience was 30 years ago, and as I meet with families of school age children, even today, they are still having the same issues. The problem is that most individuals with autism need to be taught to their unique learning styles. Many individuals with autism do not have the readiness skills for regular ed or even special ed. Robin could not sit in a chair and pay attention all at the same time. She did not have the developmental skills for readiness. No one recognized the importance of this 30 years ago. Parents should know better today.
That does not mean they cannot learn as other children, it means their readiness skills (behavior, sensory integration, language) need equal attention.
Many school systems will place a child with autism in an isolated special education school because of readiness problems. Short term, this might be fine. However, I have found once the child is singled out like this, they never return to the mainstream school and many are babysat for twenty years. They receive minimum readiness skills and education. That needs to change and hopefully, with emphasis on early intervention in many states, that will happen in a positive way in the future.

Kathleen:   Excellent points. In order for the children to be successful they need to have the ground work in place to be receptive to the ‘appropriate education’ that is being provided when it is.

During my discussions with autism expert, Dr. Stephen Shore, he is always adamant that inclusion is the way to go. If there needs to be a support framework put in place, it should be prior to the formal induction into a program. That is the ‘best practices’ goal.....for a child to have intervention (as you stated above) and then receive an appropriate education in an inclusion setting.

Ann:   Yes, but inclusion can have severe detriments when not done properly for everyone involved. I was desperate, and I had to takecontrol of Robin’s education at ten years old. Her testing scores had not moved in over five years. Nothing was working for her. Besides the readiness issues, it was also evident Robin had a serious learning disability, if not worse.
I home schooled for five years, addressing the ‘readiness’ and education at the same time. Now, from past AAAA, you see I included community socialization along with everything else. Then, and only then, was Robin able to return to public school and be successful.

Kathleen:  Oh absolutely. You provided a very well rounded learning experience for Robin. It has been my understanding that most parents who do ‘home schooling’ tend to do very very well in all areas, including socialization. This is, of course, even more important to a child with differing abilities….to be immersed in the socialization aspects of community.

In your book you said that it took teachers until late in the school year before they discovered Robin’s particular learning ‘style’. Why do you think that is and how can parents facilitate their child’s current teacher’s awareness?

Ann:    Picking on teachers now, I will say there are a several things: 1) They do not read (or understand) the written IEP (Individual Education Plan) because they didn’t write it, 2) They do not listen to parents (the system is usually very defensive), and 3) They simply do not understand autism.
All this can be seen in today’s newspapers with restraints, abuse, and seclusion behavior techniques used for individuals with autism. My question is, “so how’s that working for you?” I can’t believe society’s acceptance of this and the lack of respect and dignity for the individuals with autism today. These students never had a chance.

Kathleen:   I definitely hear what you are saying Ann. So developing a good rapport with teachers is crucial. Particularly since the potential for abuse, seclusion and other disheartening practices exists. Nurturing teacher’s efforts to understand and implement what is already present in the IEP that has been developed must be a positive step. If parents have little option BUT to have their child in public school….I’m sure this can be a helpful tool.

I have, unfortunately, spoken with several parents who have very confrontational relationships with their children’s teachers and it is not a good situation to be in when there is not an alternative to the public school setting (for them). Hopefully greater awareness and understanding of ‘differing abilities’ will begin to turn the system toward a more positive and supportive position.

Ann:  Parents must take the lead. In my case, Robin’s behaviors were better at home than at school. Why? Obviously, it’s because there was too much confusion at school and Robin didn’t have the appropriate readiness skills. Many teachers do not have the time, understanding, or the knowledge how to address this.
Coming to their defense, they do not always have the support from school administrators, either. It’s very complicated. I think sometimes the public school system has to pick and choose which kids will benefit most from their ‘program’ and our kids usually get left out! The autism road map for life is too slow and too long and dependent on too many variables.

Kathleen:  Definitely. When I last taught, (in a private school setting and my administrators were very supportive), I would ‘inherit’ certain children that basically other’s either could not or had no desire to ‘handle’. That was under very good circumstances with only 15-20 children in early elementary classes.

I understand the conundrum that public school teachers are in today and how frustrating it must be to understand the implications of a child’s IEP but have no support in implementing it. Hopefully as the awareness of autism spectrum and the increasing numbers of incidence accumulates, there will be more and more programs made available that support inclusion practices.

Ann:    Our children can learn. That needs to be pounded and pounded until it is an acceptable fact.
OK, now it’s my turn to pick on parents. They need to be their child’s advocate and their child’s progress cannot be based only on the school’s performance. It’s team work.
I had to set the baseline for Robin in the home first. If I couldn’t control her behaviors at home, how could I expect them to work miracles in amore ‘social’ environment. My ‘carrot’ to them was that Robin was doing (whatever) at home, why not school. Learning is much more than just school. I had to be an active aware parent for my child. I had to drive the car pools to social activities, I had to encourage language with people around Robin at home, I had to ‘prove’ to the establishment that she ‘could’ do things.

Kathleen:  You’ve made me begin to think, Ann, that parent education is something that we really need to address in the area of autism awareness. Robin’s success was largely based on your ‘24 hour a day’ programming with her in the areas of basic skills and socialization. Many parents of newly diagnosed children simply do not have the understanding of child development that you did with Robin. What are your thoughts on that?

Ann:  In the 1970’s when PL 94-142 was first implemented, we parents knew we had to fight for everything in the law. Many of us almost memorized it. We had parent support groups, there were community college classes on developmental disabilities, and public school seminars that parents were invited to attend. I did all of that and educated myself (multi-sensory) on Robin’s needs.  

Kathleen:  (PL 94-142, also known as IDEA) Yes, parents certainly need to take the initiative to educate themselves to the extent possible. Robin’s success story is an indication of what can be achieved when a parent advocates the way you describe.

Ann:   Fortunately for Robin, she was our third child. Our other two children sailed through the school system; thus, I knew the system. That was a tremendous benefit. Also, the fact that I was willing to do my part, even if the law said they should do it. All of this is because I was able to be a stay-at-home mom. That’s what really made the difference.  

Kathleen:   Certainly. Now, Robin’s education actually began when you met her needs in the home school setting. Tell me a little about those experiences.

Ann:  Homeschooling was not in my plan, as Robin’s mother, but I was backed against a wall with Robin’s development and I needed to remove all the negativity in her life-the public school system. Pam and Karen were in college, so we had the house to ourselves during the day. I had found professionals outside the school system who were very encouraging and supported me for over five years, giving me direction and helping me find quality therapist for Robin. Honestly, it was very rewarding and I was so relieved to eliminate all the negativity in my own life.
Just to show the intensity needed for Robin to learn, I have two pictures here of her working on school work. As you can see, I had to keep her very focused and engaged multi-sensory with everything. The video is a reading assignment. I could not wavier my attention from the assignment any more than she was allowed to waiver her attention. I had to lead by example.
Saying this, these pictures and videos show Robin’s accomplishments after five years of teaching - her behavior modification, obviously, was under control!

Kathleen:  The work that you did together in the homeschooling program laid the foundation for her success in public school later on….is that correct?

Ann:   Yes. Robin was in community social activities (part of my homeschooling) and she wanted to go to school with her peers - note: I did not say her friends because Robin still could only relate to her peers with practiced conversation. These were not friendships but socially, Robin was accepted as part of the activities. That was a beginning and all that counted for me.
Robin returned to our local high school (5 minutes from our house) for her last two years in high school. She had gone from pre-kindergarten level to sixth grade level in testing in those five years of homeschooling. She’d worked very hard..
Returning to public school, Robin was still not ‘good enough’ for regular eleventh-grade classes and she was academically too high for the special ed classes. Those students were at the second grade level.
In high school, Robin took ALL elective subjects - home economics, art, Future Farmers of America, typing, employment class, and chorus. The chorus teacher was very, very supportive of Robin. I was a parent booster for the choral department to show my support to her.
Robin loved going to high school. She changed classes by herself without incidence and acclimated appropriately to the school environment. She graduated with her peers at eighteen years old with a certificate of attendance. She was very proud of herself because she had worked just as hard for her education as all the other students.
I did not feel it was in Robin’s best interest to continue in the public school system until she was twenty-one years old. Robin was ready to move on. I set her up for success, and she succeeded. I just knew it was the right thing to do.

Kathleen:   Yes, it seems that all the real world experiences and socialization that she received in those ‘elective’ classes had served her well. After her graduation there were several steps in her transitioning into the adult world....including job placement and community activities.

Ann:   In Robin’s employment class she worked in our local community mini-library part of her first year. She scanned all the library books into their new computer system. She felt very important.
As for future job placement after high school, I think that subject is for another day.

Kathleen:  Very good Ann. Thank you for sharing your experiences with the public school system and your homeschooling one as well. Trying to navigate the world of differing abilities as a parent can be very confusing and daunting. Thank you for your book and for sharing so openly of your experiences.

Ann:    My goal was always Robin. It’s hard to keep that focus with everything else going on around you. Kathleen, I think what I’m really saying here is that parents need to pick their battles carefully. Autism is a very long journey. Robin flunked the public school system but that didn’t mean she was going to flunk ‘life.’ I took control and did what I had to do. Fortunate for Robin. Every situation is different.
I think parents (society) are too focused on their child keeping up with peers, getting that academic diploma, participating in challenging ‘clubs,’ and going to college. No one has told these parents that part of a child with autism’s learning must also include behavior appropriateness and socialization for adulthood. This includes learning responsibility, assertiveness, dynamic thinking, and self-control. That’s when relationships can blossom. That’s when keeping a job is important. That’s when self-confidence must happen for independence. A child can always go back and pick up a GED and attend college, if that’s important to them. However, appropriate behavior and socialization must carry equal importance in education, and it all starts with academic readiness.
There is so much more specific help in the education chapter of my book with the developmental steps of exactly how all this happened and what materials I used, including how Robin learned place value and her multiplication tables.

Kathleen:   Being able to form and sustain lasting relationships is really why we come into this world.

Thank you Ann. Confidence, self-esteem and independence are definitely the crux of the matter….and where life happens. Next week, let’s talk a bit about Robin’s transition into the world of employment.

Ann:   Sounds good.  

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