April 21, 2014 at 4:18 p.m.
Autism 101: Rhinelander woman shares advice from mother's point of view
Autism 101: Rhinelander woman shares advice from mother's point of view
Thompson is the mother of two children with autism. She came to Rhinelander about six months ago and immediately began asking about the services offered in the state for families who have autistic children. She found a lot of information and assistance is available, but felt there was more that could be done to help families understand the process from diagnosis to starting school and beyond.
"I started asking families and agencies if there was an Autism 101 program for families. I wanted to know what agencies were here. I wanted to know what help there was for my children. I wanted to know the special education process for the state of Wisconsin - every state is different," Thompson said. "When I got here, I realized there was a lot of information out there, a lot of agencies to provide assistance, but not really a step-by-step breakdown of what I needed to know. So, I thought I would put together this Autism 101 presentation for families who are newly diagnosed or who are in the diagnosis process."
Thompson gave her presentation earlier this month as part of an Autism Awareness Month event in Rhinelander.
She started her talk by explaining what autism is and what it means when a child is diagnosed. Thompson said there's one thing everyone needs to remember when discussing autism - if you've met one child with autism, you've met one child with autism.
"Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them," she said. "It is a spectrum condition which means that while all people with autism share certain difficulties, their condition will affect them in different ways."
Sharing statistics from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Thompson said there has been a 30 percent increase in autism diagnoses since 2007.
"A study by the (Center for Disease Control) estimates that one in 68 children between the ages of six and 17 have been diagnosed with an Autism Spectrum Disorder. This represents a 30 percent increase since 2007 when the rate was reported as one in 88," she said.
"Something to think about, it's one in 42 for boys and one in 189 for girls. Boys are five times more likely to be diagnosed. If you have a child with autism, the chances of having a second child with autism increase by 30 percent."
Thompson said there are multiple symptoms that can used to identify a child with autism. Among them are persistent deficits in social communication and social interactions, deficits in nonverbal communication and deficits in understanding and using gestures. Other symptoms of autism include a lack of facial expressions and nonverbal communication and deficits in developing and maintaining relationships.
"This means that with back-and-forth conversation, a lot of times they will not know how to handle a conversation. We have to make social stories and video modeling to show the children how you partake in a conversation or other social scenarios," Thompson said.
"The children with autism that we know today have a hard time understanding the faces of anger, depression, happiness, excitement, etc. We have to make social stories or video models to show these children what these faces look like and mean. They also have trouble understanding sarcasm and take things literally."
As an example, Thompson said many times if you tell a child with autism that it is raining cats and dogs, the child will take that literally and go to the window to see whether cats and dogs are falling from the sky.
As another example, "if you say give me a minute and we'll go and play, in 60 seconds, you'd better be ready to go play," she added.
Developing and maintaining relationships is another sign of autism.
"When a child with autism plays, they do side-by-side play but not interactive play. If you sit them by their sibling, they'll be doing their own thing but they won't actually interact," she said.
Another symptom is the need for repetition and a strict schedule of exactly the same thing at the same time each and every day. If that routine is changed, a meltdown will likely ensue.
"Change the routine and what happens? A meltdown," Thompson said.
"It's because what is known to them is what they can handle, it's how they know how to interact."
Should a meltdown occur, Thompson said a parent's only option is to wait it out.
"A child during a meltdown, you cannot reason with, you cannot teach new things, you cannot introduce social expectations. Their world is at an end and they don't want to hear anything else," she said.
"You have to wait for them to calm down and then discuss what's going on."
Much like the need for repetition, obsessive behavior can also be a sign of autism. However, those obsessions can be used as learning tools.
"Children with autism can become obsessed with at least one thing. My daughter was obsessed for two years with the song 'Baby, Baby,' by Justin Bieber," she said.
"We used it to our advantage. We used the song to learn. If she was to do something and she did it without a meltdown, guess what she got? The 'Baby, Baby' video."
Finally, the last symptom Thompson described was hyper or hypo reactivity to sensory input.
"That includes apparent indifference to pain or temperature, adverse responses to specific sounds or textures, excessive smelling or touching of objects, or visual fascination with lights or movement," she said.
"They either can't get enough or they can't take it at all. For example, touch, they either get touched and have a meltdown or they will not feel it. That's why you sometimes see an autistic child banging their head against the wall or see one scream in pain at the slightest touch."
Should parents recognize these symptoms, Thompson said they should be firm with doctors who may advise waiting another couple of months to see if anything changes.
"Parents know, nine times out of 10, before the medical field does. We're with the children. We see our friends with their babies and realize our kids aren't doing the same things. They don't look at us and smile, they don't like to be touched," Thompson said.
"We bring it up to the pediatrician and what do they say? Give it a few months and we'll see what happens. It's our job to be persistent and keep going and keep saying something's not right. It may not fully manifest until five or six or seven - when they're in school - but being persistant from the start means it's in the file."
Once a diagnosis is made, it's time to begin discussing therapy. Again, Thompson reminded the crowd that knowing one child with autism means you know one child with autism - they're all different and will all respond differently to the various forms of therapy.
No matter what therapy is chosen, Thompson said each is like having a "new full-time job."
The most common therapy is known as Applied Behavioral Analysis (ABA) and most of the other therapies mentioned draw from the ABA practice.
"ABA is like the go-to therapy. All the other therapies pull from ABA. It's the one you're really going to want to know about, to really get educated on. Even if you don't use it," Thompson said.
"If you decide to use one of the other therapies, you will be pulling from ABA."
To help with that education, Thompson explained what ABA is and what it entails.
"ABA is a scientifically validated approach to understanding behavior and how it is affected by the environment. ABA sessions are customized to each learner's skills, needs, interests, preferences and family situation. It works on things like play, social interactions, academics, self-care, work situations and community living," she said.
Discrete Trial Therapy is another option. It focuses on teaching one skill at a time. Thompson used a handshake as an example. The child is told the directions of a handshake and then prompted to shake hands. The child then responds in some way. If the child responds correctly, they are congratulated. If they do not, they are corrected. A short time is given for the child to understand what just happened and then the process is repeated again and again.
There is also Pivotal Response Treatment. PRT "is a naturalistic behavior intervention developed to facilitate stimulus and response generalization, increase spontaneity, reduce prompt dependency and increase motivation while still relying on the principles of ABA," Thompson said.
"When these pivotal behaviors are enhanced, improvement in autonomy, self-learning and generalization of new skills will follow."
Verbal Behavior Therapy is "designed to motivate a child to learn language by developing a connection between a word and its value," Thompson said.
"If a child wants a cookie but is nonverbal and doesn't know how to express that, this therapy will help the child learn that, even if (he or she) just (points) to the cookie and (say) cookie, the child will get a cookie."
The Early Denver Start Model is heavily influenced by ABA. It is an "early intervention program that integrates a relationship-focused developmental model with the well-validated teaching practices of ABA," Thompson said.
Floortime therapy is exactly what it sounds like, Thompson said. It focuses on emotional and intellectual growth.
"Floortime does not target speech, motor or cognitive skills in isolation. Rather, it addresses these areas through its focus on emotional development," Thompson said.
Finally, there's TEACHH, which stands for Training and Education of Autistic and Related Communication with Handicapped Children. It focuses on the "Culture of Autism" and develops individualized plans for each child and family.
No one therapy is considered the right path for every child. Each child is different and therefore each therapy plan will be different, Thompson said.
"You have to do it by a case-by-case basis," she said.
"You have to take into account how the child will best learn and grow from each therapy. Some benefit from just one type of therapy. Some benefit from a combination of two or three. Some benefit from a little of all of them. It's something you have to work through and figure out with your therapist."
For the last section of her presentation, Thompson went over how to decide if a child needs special education.
First, parents need to contact the school for an evaluation, also known as a referral. The evaluation will be made by a specialist and will be paid for by the school.
Once the evaluation is complete, the Individualized Education Program (IEP) team will meet. The team consists of the parents, a regular education teacher, a special education teacher, an LEA representative (usually the principal or special education director), someone to explain the results of the test - it can be the special education teacher or the LEA representative or somebody else who is qualified - and anyone else the parents wish to bring for support.
At the meeting, the team will decide how much, if any, special education is needed for the child.
"The team will decide if the child has an impairment that affects their education," Thompson said.
"So many parents believe that because the child has a medical diagnosis of autism, they (will) automatically get special education. That's not true. The autism has to affect the child's educational learning."
Should the parents disagree with the team's findings or decision on special education, an independent evaluation can be done and mediation can take place to come to an agreement between the parents and the school.
Once an agreement is reached, the IEP team will implement the special education decision and meet at least once annually for updates. Parents can request IEP team meetings whenever they would like to make sure they are staying on top of their child's needs.
Reevaluations are done every three years.
"There will be a reevaluation done every three years," Thompson said. "Why? Diagnoses have been known to change."
One of the most important lessons Thompson wanted parents to understand was that special education should not carry any type of negative stigma.
"Special education is a service, not a place," she said. "Your child is not in special ed, they just receive special ed."
For more support, there is a Rhinelander autism support group that meets the second Tuesday of every month during the school year in the Pelican Elementary School library. All are welcome to attend.
Marcus Nesemann may be reached at [email protected].
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