The energy, dedication, perseverance of his mother helped him get an education and start an adult life. Social worker Dina Gassner tells the story of her struggle for the future of an under-promising son and for the right to a decent life for all children with autism.
Psychologies: How old was your son when he was diagnosed with autism?
Dina Gassner: A little over three. He was also diagnosed with mental retardation (now in the US we say “intellectual disability”). In fact, he was always smarter than it turned out according to the tests, it was just that the specialists could not establish contact with him.
The specialist who first tested positive on an IQ test with my son first discussed video games with him in two consecutive meetings. They sat on the floor in his office, and the psychologist showed Patrick how to get to the next level of one game. It was just some kind of magic – my son believed that this uncle wanted him to succeed, and his results were quite high.
What was your first reaction to your son’s diagnosis?
You know, I guess the fact that I’m autistic myself was more of an advantage than a problem. I didn’t get depressed, but immediately began to act. I know that many neurotypical (that is, ordinary, without autistic features. – Approx. ed.) parents are immersed in the Internet, intimidate themselves, spend days and months mourning a child. I didn’t have anything like that.
Now, if you asked me about my emotions not in relation to the diagnosis, but in relation to the education system with which we had to fight, this is a completely different story. I was told that Patrick required “too many” resources and that he was not “promising” enough to spend those resources on him. This is where I really cried for hours.
In Russia, sometimes it is believed that in the US everything is just perfect in relation to autism. Turns out it’s not?
My husband and I have been married for 22 years. When my daughter, our oldest child, left for college and my son was 10, I left my husband. Only to find better services for my son. Over the course of five years, Patrick and I moved four times from city to city to find the help he needed.
In the United States, the education system generally recognizes that it should support children with autism, but in Russia, as I understand it, the state does not believe that it is worth spending money from the budget on autism. But we are far from perfect.
Sometimes schools simply state that they don’t have money for additional services for children with autism. But this is also a matter of priorities: if you have enough money for a baseball field, then you have the financial capacity to provide an education for every child. It’s just that the field is more important to you.
So there is knowledge about autism in the United States, there are resources, but they are distributed very unevenly. Parents who are fortunate tend to keep quiet about what services their children receive.
Why?
One of the most advanced universities in the field of autism is the University of South Carolina, where they developed TEACCH, an educational model for children with autism. And so hundreds of thousands of parents rushed to South Carolina. There were more children with autism in one city than in the entire state! The system was overloaded, collapsed, and in the end everyone lost. Therefore, very often parents of children receiving quality care do not want to “advertise” it.
And what is this help? Does it include applied behavior analysis?
It’s not always the same. If Asperger’s Syndrome is diagnosed at two or three years old, then the child will most likely not be treated with Applied Behavior Analysis. Well, if the child has severe autism, there is no speech at all, if he has a lot of unwanted behaviors, his parents will look for an intensive behavioral therapy program (40 hours a week). Not every educational complex can offer something like this, therefore, as a rule, such parents either begin to fight the system or are forced to move.
Did your son go to a public school or a special school?
From the very beginning, we believed that our son needed full inclusion, which means a regular school. But Patrick needed more help. Someone had to take notes for him, take dictation for him, adapt working materials.
For example, instead of detailed answers in the control, he had to do a test with a choice of various answer options or make sentences from ready-made words. As soon as we achieved such a rating system, his abilities immediately began to manifest themselves in a new way.
But they still wanted to transfer him to a correctional school. One school simply changed his curriculum from general education to remedial and declared that he would not be allowed to take his matriculation exams. We turned to lawyers to cancel this decision.
And what is the child himself at school in such a conflict situation?
I’m still amazed that, despite all the chaos I tried to deal with, Patrick calmly attended all the classes every day and continued to study, as if he had some kind of “protective bubble”. He never realized that his experience at school was very different from that of other children. I believe that it was this factor that protected him from low self-esteem and low results.
In addition, the last five years at school (he was given an extra year to study in high school) he had just excellent academic performance. Because this school adapted the teaching materials and provided him with the support of a tutor (mentor). He even played on the school’s hockey team, and I became the manager of that team. He made friends, he still communicates on Facebook with former classmates.
What happened after school?
At first he was in a special program at a local college, and the next year we enrolled him at Marshall University in West Virginia. It is the university with the oldest student support program in the country. It is very difficult to get there, every year they accept only 10-11 students.
In total, there are about 40 children in this program. There are personalized services. One student will need near-constant social support, yet progress through the academic program with ease, while another student may have sleep problems causing them to miss classes.
My son, for example, will never miss a lecture, but if he needs to ask the teacher about his scores or find out the details of the assignment, someone should go with him, he cannot do it alone. At first, Patrick could not ask teachers even the most basic questions.
Did he live on campus on his own or did you live with him?
For the first two years, I moved to live next to his hostel, on weekends he sometimes came home, but gradually learned to live on his own, began to wash his own clothes and the like. He had three levels of support. First, a special program for students with autism, which helped him understand the structure of the university, communicate with teachers and fellow students.
Secondly, there is an assistance service for students with disabilities (there is one in every university), which, for example, takes care of taking notes. Finally, there is a third level of support provided by the state – rehabilitation. It includes, among other things, additional tutoring sessions and a laptop with software that reads texts aloud.
In December 2017, Patrick should receive a bachelor’s degree. When he comes to visit me next week for the holidays, we will attend a kind of “rehearsal” of interviews, that is, learn how to pass job interviews. If you had asked me when he was three years old if I hoped that he would receive a high school diploma, I would most likely answer: “No.” And that he went to college – I could not imagine this at all.
We dreamed that by the age of forty he would be able to live alone, if a housekeeper came to him, and his sister would take care of his accounts. And now he is 28 – and he can already live completely independently.
What is his life made up of?
He did such a good job of living in a university dormitory that I returned to New York and enrolled in graduate school. And Patrick moved out of the hostel into a tiny one-room apartment, he does his shopping, walks around the city, goes to bookstores, cinemas, restaurants.
Recently, one of the most amazing changes in his life took place – thanks to a computer program that “reads” the text for him. It highlights each word so that he sees and hears each word separately at the same time, without losing the place where he left off. And for the first time he had a desire to read for his own pleasure, already without a computer!
Neurotypical children can read at this level at about 9 years old, but for him this is a giant progress. It is believed that if a child has not learned to read by a certain age, then he will never learn it, but my son disproved this myth.
You mentioned that you also have an autism diagnosis. Looking at your son, did you find in him a resemblance to yourself and decided, as they say, to “check”?
The fact is that the manifestations of autism in my son were practically nothing like mine. Everything was exactly the opposite! As a child, I had hyperlexia, that is, I learned to read on my own very early. I was very smart, I dreamed of becoming a scientist, although with mathematics I was doing very badly.
When I was eight years old, my younger sister died in a car accident. In middle school, I was sexually abused by a family member and then similarly abused in a church. These were severe injuries, but it is difficult to judge whether this is due to autism.
A huge role in my life was played by the meeting with Lian Holliday Willey, who wrote the book “Pretending to be normal.” Our experience had a lot in common! For the first time, I began to think that I, too, might have an autism spectrum disorder.
And at the age of 38, I was diagnosed with Asperger’s syndrome, although I had previously been diagnosed with bipolar affective disorder. As a result, I had to “get off” a whole ton of drugs that I took, and it was very hard. There were also losses. For example, despite the problems with mathematics, I had the ability to memorize long and complex numbers without difficulty and in large quantities. I can’t do that anymore. But maybe it’s age. I’m 58 years old.
Has your life changed because of your own diagnosis?
It is important to be aware of your limitations and not see them as character flaws. I have a good example. In graduate school, I study statistics. At the same time, in childhood, violence against me was committed by a person who also studied mathematics with me. It wasn’t until I was 50 that I was able to enter math class without having a panic attack. And then it dawned on me: I didn’t understand the equations because of that mental trauma!
And then I realized who and what you can ask for in order to succeed. I began to conduct quantitative statistical studies, corrected them with the teacher, then did it again. In the summer I studied with a tutor – in a word, I worked more than anyone else. I really wanted to pass my math exam! And I passed it along with others.
How did you get the idea to write and talk about people with autism?
In college, I performed in amateur productions, and then worked as a sales manager and conducted training for salespeople. So I was never afraid of a large audience. In doing so, I also had a unique opportunity to understand what goes on in the mind of a person with autism.
I began speaking at autism hearings both in Washington DC and in my home state. But then it was not up to that, I completely took up my son. And only when the situation more or less normalized, I again began to take an active part in social work. On the other hand, I never stopped writing articles, doing my personal development and learning.
What are your and Patrick’s immediate plans?
I need to pass the remaining subjects in the doctoral program, then write a dissertation. If everything works out, I will stay in New York, and my son will move here, he wants to live in this city. I so hope he can find a job!
Our goal is his work in the museum. My daughter invites me to live with her and her grandson in Kentucky, but that state doesn’t have the social support Patrick needs. And if we move there, then I will have to become his “social program” again, and this will be a huge step back for both of us. In addition, he now has navigation skills, he perfectly uses public transport, so it will be easy for him in New York. By the way, I think he will like it in Moscow. I hope someday I will be able to come to Russia again, already with him.