Autism Book Author Speaks at MCA

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Screen Shot 2014-03-30 at 9.16.38 AMBy Terry Rogers

On Thursday, March 27, Barbara Boroson, the author of “Living on the Edge: Parenting a Child on the Autism Spectrum,” spoke at the MPAC meeting at Milford Central Academy. Ms. Boroson worked as a social worker for many years in a school for special education student, and is the mother of son diagnosed with autism spectrum disorder.

According to Autism Speaks, autism spectrum disorder includes many complex disorders of brain development, and cause difficulties with social interaction, verbal and nonverbal communication, as well as repetitive behaviors. In May 2013, the DSM-5 diagnostic manual merged many different disorders into the autism spectrum diagnosis. Previously, disorders such as Asperger’s Syndrome, autistic disorder, childhood disintegrative disorder and pervasive development disorder were considered distinct subtypes of autism.

“I worked in the field before my children were born, and the children with autism always fascinated me,” Ms. Boroson said. “They were intriguing and I found it interesting how they saw things and thought about things. What I did not know at the time was how terrified the parents I worked with were until I had a child diagnosed with autism.” Today, Ms. Boroson’s son is 15 and attends a special education school in New York, where the family resides.

Having been on both sides of the issue, Ms. Boroson said she understands the frustration parents and teachers feel when it comes to dealing with children on the spectrum. She says it is sometimes hard for both sides to understand that a child can act completely differently at home than they do at school.

“At almost every event where I speak, teachers express the same thing as their biggest challenge when it comes to an autistic child,” Ms. Boroson explained. “Teachers say they think parents are the biggest challenge, and, a lot of the time they are right. Often, when a teacher meets with parents and describes an out-of-control, combative student, parents are quick to say ‘not my kid!’ On the other hand, when a teacher speaks of a docile, calm child who is a strict rule follower, teachers are surprised, replying ‘that never happens at school!’ With autism spectrum disorder, they may both be right.”

Ms. Boroson explained that school is sometimes constant stimulation, with 20 or 30 students in a classroom, and for a child with autism, this can be particularly challenging. In addition, schools are created for the majority, and although many accommodations can be made for children with particular disabilities, all students must learn to adapt to the needs of others in order to be prepared for the real world, even those with autism.

“As parents, our first instinct is to stick up for our children, but we have to remember that teachers deal with many students, not just ours,” Ms. Boroson explained. “What we need to remember is that, whether our child has autism or not, we must prepare them to live in the real world, and that means teaching them to consider the needs of others as best as they can. On the other hand, teachers need to understand that a child with autism does not learn by osmosis, and that school could cause them severe anxiety.”

Ms. Boroson also explained that it is possible that a child can be very difficult at home, yet be well-behaved at school. She used her son as an example. “My son is a strict rule follower” Ms. Boroson said. “One day he came home from school, extremely agitated, and when I asked what was wrong, he said that he could not get his seatbelt fastened on the bus. There was a strict rule on the bus that they were not allowed to talk, so he felt as if he could not ask the aide to help him. In that case, there was a rule to always wear a seatbelt and a rule not to talk, and they were in contradiction to each other, which caused him significant anxiety.”

Ms. Boroson also told of a family vacation she planned not long after her son was diagnosed. Her idea of vacation was to have no schedule, doing things on the spur of the moment. The trip was a disaster, as her son needed the normal, rigid routine like they had at home. She said that many times, children with autism are so intent on following the rules, they look at home as a sanctuary. They remain engaged all day and fall apart where they feel safe, and Ms. Boroson said that parents may view this as a positive since it indicates a child who is learning to adapt to various circumstances.

“Before I had a child with autism, I had no idea my husband and I would spend 15 years arguing about when to push him to do ‘normal’ things and when to let him be quirky,” Ms. Boroson said. “In kindergarten, we were pressured to sign him up for soccer so that he could make ‘lifelong’ friends. Against our better judgment, we did, and spent every Saturday in a battle. In his mind, if you wear sneakers, you have to be wearing a hat. There were children playing soccer wearing sneakers but no hats, and that made no sense to him. He would also get distracted and simply lie down on the field during plays, or have a meltdown because something was out of the ordinary that day.”

Ms. Boroson said that the most important thing for parents and teachers to do when dealing with a child on the autism spectrum is to work as a team. She said that it is critical that both the school system and the parents welcome the perspective each other has regarding the student. “One way to view the situation is that teachers are education experts, while parents are historical and holistic experts,” Ms. Boroson said. “We all have, at heart, the best interests of the child, but we need to talk and to listen to each other.”