Coach Mike

Helping Kids with Autism



Frequently Asked Questions about Coach Mike and Autism


  1. Why do you enjoy working with kids with autism and other disabilities?
  2. What makes you think you are an expert?
  3. How did you start working with kids with disabilities?
  4. What techniques do you use in working with children with autism?
  5. Which is better - ABA or the DIR model?
  6. What experience and education do you have in working with children and adults with autism?
  7. Who are the foremost experts on autism?
  8. What causes autism?
  9. How would we start?
  10. How do you convey information to the parents?
  11. How does exercising and playing sports help someone with autism?
  12. What are the best sports for children with autism?
  13. How do you supervise a play date with an autistic child and a typically developing child? 
  14. How do you teach empathy to a child with autism? 
  15. How do disparities between receptive and expressive abilities, motor skill problems and sensory integration difficulties relate to delays or deficits in responding to requests by speech or actions?

1.     Why do you enjoy working with kids with autism and other disabilities?

I do it because it’s fun. I love the challenge of helping someone be happy, gain confidence, and make progress. To me, it’s a privilege and honor to work with children and adults with disabilities and help them reach their full potential. It’s a pursuit that is meaningful, authentic, fulfilling, and highly enjoyable.

Also, I’ve always loved sports, and I root for the underdog. Anybody who has played sports or been a sports fan knows that when someone says you can’t do something, you love to prove them wrong. I prefer working with the kids who have the most severe disabilities because I love the challenge. One of the things I like most about working with kids with autism is the amount of progress that they have the potential to make. I’ve successfully taught soccer, chess, and social skills to children with autism in instances where others were skeptical that it could be done.

Although I mainly work with kids with autism, I also work with kids with other disabilities. I didn’t set out choosing to work solely with autistic kids; however, there are so many children with autism these days that that seems to be the greatest need as well as the greatest challenge.


2.     What makes you think you are an expert?

I’m not an expert. I simply try my hardest and do my best. I have a lot of experience working with kids with disabilities, as well as with typically developing children, but I’m still always learning and I believe that there’s always room for me to improve. I believe that many of the lessons learned with kids with disabilities can be translated to typically developing kids and vice-versa.

I bring great effort and enthusiasm to my work, but I also have a calmness and patience that seems to work well with kids who have autism. If I feel that there was a session in which I wasn’t able to help a child, I always analyze and note what worked, what didn’t work, and consider new strategies.

It is tough sometimes to make suggestions to parents who know their kids infinitely better than I do, and I’m certainly wrong at times, but I have often been told by parents that it helps for parents to get the opinion of someone on the outside, who isn’t as close to the situation. Without trying new things, you’ll never know what limits can be pushed.


3.    How did you start working with kids with disabilities?

My mother was a day care provider, and that experience had a big influence on me. Two of the kids had disabilities, and I played sports with one of them. Throughout most of my 20s, I didn’t do any work with children.

Then in May of 1999 I had a chance meeting with someone who was a volunteer for an organization called Kids Enjoy Exercise Now, which provides recreational opportunities for children (and, at the time, young adults) with disabilities. She urged me to volunteer. I’ve always liked working with kids and playing sports, so this was an activity that was perfect for me. I was pretty much hooked from the start, and the whole experience of volunteering at KEEN was sensational. I joined the Coaches Committee and was named KEEN Volunteer of the Year in 2003. I consider myself lucky to have been a part of KEEN and witness KEEN expand its programs and launch new affiliates across the country.

Several years ago, I started working with kids and adults in their homes, providing a variety of recreational activities and behavioral therapies.

I later became a Job Coach and Assistant Teacher for the Post-High School students (and a substitute teacher for students at all age levels) at the Ivymount School in Rockville, MD, which provides education for students with serious developmental delays, learning disabilities, communication disorders, autism, and/or multiple disabilities.

In 2006 and 2007, I volunteered as a coach in the TOP Soccer Adaptive Program run by Montgomery Soccer and Special Olympics. As with KEEN, the TOP Soccer Special Olympics program was a spectacular experience. The culmination of the season was when the kids carried the flag around a track to the Olympic music theme. Another highlight was witnessing the higher functioning athletes helping the other kids. I had an incredible time and it was a tremendous pleasure to be a part of it.





4.     What techniques do you use in working with children with autism?

There are many therapies out there and some may work better for some children than others, since children on the autism spectrum display such a wide variety of issues. Like snowflakes, no two children with autism are exactly alike.

I combine elements of Applied Behavior Analysis (ABA) as well as the Developmental, Individual-Difference, Relationship (DIR) based method. I believe a combination of ABA and DIR methods is optimal because ABA provides step-by-step instruction while DIR focuses on relationships, emotions and interests. Children need both structure and meaning when they learn.

ABA is used to teach academic, communication, problem solving, behavioral, social, play, and other skills by breaking tasks down into small steps and practicing drills. ABA also uses positive reinforcement and just as much prompting as is necessary. Inappropriate behaviors may be phased out by redirecting to target activities rather than drawing more attention to those behaviors. Antecedents, behaviors, and consequences are tracked to try to determine the reasons behind behaviors and implement appropriate interventions. However, some behaviors may be accommodations children need to manage their body or sensory difficulties. Therefore, I focus on building skills more so than reducing behaviors.

The DIR method focuses on the emotional development of the child. It takes into account the child's feelings, relationships and individual differences. DIR involves following the child’s lead and enables the child to learn by doing what he or she likes to do in a fun and meaningful way. DIR focuses on skills in all developmental areas, including social skills, emotional awareness, cognitive ability, verbal and non-verbal communication, sensory and motor skills, and body awareness. The DIR method can also help a child generalize skills initially learned through drills.

Part of the DIR model includes Floortime, which is based on working with a child at his or her current developmental level, and building upon strengths and interests in a way that is meaningful to the child, rather than just focusing on surface behaviors and drills that don’t always generalize into life skills. Floortime can be especially effective during periods when a child needs more play and less work.


5.     Which is better – ABA or the DIR model?

In my opinion, this question is kind of like asking, “Which is better in football – running the ball or passing the ball?” or “Which is better in basketball – a zone defense or man to man?” They’re both necessary in different situations, and a balance of both may be most effective. For example, you can do repetitive drills broken down into small steps based on the child’s individual differences, interests and relationships, making sure to incorporate social skills and emotions.

In doing so, children can learn valuable skills such as sequencing the steps needed to complete a task. Children with autism benefit from structure, but they will be more engaged if the drill involves something in which they are emotionally invested. The DIR model is harder to quantify than ABA, but DIR is built on relationships, spontaneity and interaction. Children are not robots, and drills can’t be done in a vacuum.

For example, you can teach a child who is obsessed with a particular toy communication and problem solving skills in the following way: Hide the toy in one of your hands and get the child to reach for it and choose which hand it is in. Then you can do the same thing by holding the toy behind your back, or placing it near your face to establish eye contact. Subsequent steps may include getting the child to make sounds or use speech if possible to request the toy. The toy is used as a reward. This example is based on one in Engaging Autism by Dr. Stanley Greenspan.


6.     What experience and education do you have in working with children and adults with autism?

I have a Graduate Certificate in Autism and other Pervasive Developmental Disorders from Johns Hopkins University. This is an excellent program and the faculty is outstanding. I also completed a course at George Washington University: Family Support and Guidance in Special Education. In addition, I have 10 years experience volunteering with children and adults with autism and other disabilities. I have four years experience providing autism services part-time, and nearly two years on a full-time basis.

I'm not pursuing a Masters in Special Education because I'm not interested in becoming a full-time teacher, although I have extensive education as a substitute teacher. I already have a Masters degree (MBA), and I will continue to get special education training periodically to update my skills. I work mainly one-on-one or with two children, because I believe that is the best way to make the most progress. There's no substitute for actually working with the children.

Whatever degree or certification someone has, keep in mind that there will be people with great skills and others with poor skills. There are excellent doctors, and doctors that are inadequate for your needs, and the same principle applies for practitioners no matter what the degree or credential. Unfortunately, autism doesn't fit neatly into a box, and neither do its therapies and treatments.

The Board Certified Behavior Analyst (BCBA) is a worthwhile credential based on ABA. See an article describing the BCBA credential. Also see the Interdisciplinary Council on Developmental and Learning Disorders website for information about the DIR model and Floortime.

The BCBA may be great for certain practitioners and families, however, my feeling is that the BCBA is too ABA-intensive for me, so I do what I believe in and use what I perceive to be a more well-rounded and effective methodology. I incorporate the DIR method in addition to ABA principles, using meaningful reinforcement so that skills are generalized into the natural environment.




Myths About Autism
by Mike Frandsen
 
Myth #1:
If a person with autism cannot speak, it means he or she cannot understand you.

Deficits in communication are not necessarily indicative of low intelligence. The ability to understand someone may not always be apparent in people with autism who have poor communication skills. People with autism who have improved communication skills through education and intensive one-on-one therapy have said that they wanted to respond to people when they were younger, but they were unable to for various reasons. Many autistic people receptively understand language more so than they can expressively communicate it. In addition, motor skill delays and sensory integration issues can play major roles in an inability to communicate at desired levels.
 
Myth #2:
People with autism are not interested in social interactions.

While impairments in social skills go hand-in-hand with autism, it is a myth that people with autism do not desire peer-to-peer relationships. Rather, the neurological processes that result in typically developing children interacting with others and picking up on social cues are not yet developed in children with autism. Children may need guidance and therapy simply to learn how to play with other children. Over time, through therapy and play dates, social skills can be learned to varying degrees. Many people with autism who have adequate communication skills say that they do want friends but that interacting on a social level does not come naturally to them. The same concept applies to feelings – children with autism do experience emotions but rarely express them to the same extent or in the same ways as typically developing children. Understanding and regulating emotions can be learned through practice as well.
 
Myth #3:
Nothing can be done to improve the problems experienced by someone with autism.

Nothing could be further from the truth. Many children and adults with autism have experienced dramatic improvements in their cognitive, social, and behavioral skills through special education in schools and interventions led by parents and professionals at home. The challenge is finding the right therapy to engage the child in an environment that is optimal for learning and generalizing skills to the real world. The wiring in the brain can continue to be exercised like a muscle. Even though the majority of development occurs early in life, new pathways can always be developed.
 
Myth #4:
People with autism have incredible talents in a specific area.

The movie "Rain Man" popularized the notion that autistic people are "savants" or geniuses in certain areas. While some people with autism have these unique abilities, it is more common that people with autism may be very proficient or knowledgeable in particular areas because of years of restricted, repetitive and stereotyped patterns of behavior. By identifying and focusing on the strengths of people with autism, the activities and academic areas that resonate with them, and subjects in which they can become truly engaged, we can find windows to the areas that will result in the most progress for cognitive and social learning. If this can be done in a way that allows for spontaneity and creativity in addition to providing structure, autistic people will make great progress.


7.     Who are the foremost experts on autism? Parents are the greatest experts on autism. Everyone else is second. This includes, alphabetically: ABA Therapists, DIR Therapists, Occupational Therapists, Medical Doctors, Physical Therapists, Psychiatrists, Psychologists, Scientists, Social Workers, Speech Therapists and others. Parents know more about autism than anyone else and they should be respected by doctors and other professionals accordingly.

Lynn Hamilton says in her book Facing Autism: Giving Parents Reasons for Hope and Guidance for Help, “You will need to initiate the discussion and be persistent in fighting for what your child needs…Don’t give up!..I often urge parents to stop seeing the doctor as the ultimate authority and to start viewing him or her as a member of their board of advisors.”

While at NIH, I suggested to an MD who is one of the experts on autism there that the gluten-free, casein-free diet has improved symptoms to some extent for a certain subset of children with autism. This diet involves avoiding proteins found in wheat and milk, to which some autistic children – usually those with digestive problems – may be allergic or sensitive. This person said, “Yes, but that’s only according to the parents.”

I found this response to be offensive and dismissive because, regardless of the subject matter, it implies that someone who spends an hour every six months with a child knows more about that child than a parent who spends 365 days a year with that child. The statement doubts the veracity of accounts told by the parents. I only mention this because, unfortunately, this is the attitude that many medical professionals hold. Many doctors and researchers don’t seem to know much about people, judging by these types of attitudes. At the same time, there are many outstanding, compassionate doctors who are on the forefront of effective autism treatments.



8.      What causes autism?

Most experts agree that autism is caused by a combination of a genetic susceptibility or predisposition followed by some type of trigger[1] or triggers, such as environmental factors. However, any more information would be outside the scope of this website.


9.    How would we start?

First, I would meet with one or both of the parents to discuss your goals for your child and to see if we mutually agree that it would be a good fit. The first session with the child can take place right after the meeting with the parents, or at a later date. The first session with the child is free so that the parents can be sure it would be a good fit. You would interview me to determine whether I can provide what you’re looking for for your child. At the same time, I need to know that your goals are compatible with mine.


10.    How do you convey information to the parents?

Information can be conveyed in person before or after sessions, during status meetings or through e-mail. I believe that status meetings with parents and any other therapists or practitioners can be very useful to discuss any strategies, goals, or suggestions. The parents need to be on board with the practitioner’s plan and vice-versa. These meetings are an important part of determining what works, what doesn’t work, and which interventions to implement. Parents must be in agreement on the major aspects of what will be done, otherwise it’s similar to trying to accomplish a project without management support.

I believe when you are talking about the child, it should be done out of his or her earshot as much as possible, because many children receptively understand language more so than they can expressively communicate. It can be very frustrating and also deflating to hear someone discuss your limitations right in front of you, every day, for many years. It can become self-fulfilling. Many people with autism have said that they do not like to be talked about in front of them.

Think of the example of the person who never sings, who says that early in life someone said she was a terrible singer. She never forgot that statement, and therefore she didn’t try anymore. Compounding the problem is that some autistic individuals have excellent hearing, may actually hear some sounds louder than the rest of the general population, and in some cases, have excellent capacities to remember – so if you’re talking about someone in front of him or her, think twice about what you say.


11.    How does exercising and playing sports help someone with autism?

Exercise and sports are fun, give kids confidence, and improve social skills. Exercise can also increase attention span and reduce aggressive tendencies.

Sports and exercise are underrated and underutilized therapies for improving the symptoms of children with developmental disorders, deficits or delays. They can help children improve muscle tone and lose weight, two common problems for autistic children, especially those who are affected by side effects of medication.

Exercises and stretches that have their roots based in yoga can help children become calm, focused and balanced. Exercise also gets more oxygen to the brain, reduces stress and improves sleep.


12.    What are the best sports for children with autism?

This is a hard question to answer because of the wide variety of differences in the problems that children with autism face. Swimming often calms children with autism because it can balance some of their sensory integration issues. Bowling is simple and easy, although the sound of the pins falling down may be stimulating to some kids and distracting to others. The weight of the ball can also provide kids with sensory input. Being pushed in a swing or jumping on a trampoline seems to work for a lot of kids because it gives them a sense of where their bodies end, which is a problem with kids who have sensory integration issues.

Soccer is the most basic team sport although some kids lack the aggressiveness necessary to participate in a game. Basketball is ok, but more shooting baskets than playing a game, and often with a short hoop and/or a smaller than regulation size ball. Badminton can work because of the lightness of the racket.

The bottom line is that different sports and exercises will work with different kids, and you’ll never know which ones are best until you try. Stretching and yoga-based exercises can calm a child and ultimately increase attention span.


13.    How do you supervise a play date with an autistic child and a typically developing child? 

You have to make it easy enough for the child with autism, yet challenging enough for the typically developing child, and fun for both of them. You need to explain to the typically developing child that “Johnny doesn’t always understand how to play, so you need to help him out. He wants to have fun but doesn’t always know the rules, so talk to him and give him a high five.” Younger typically developing children can also be paired with children with autism.

With two children with autism, you can’t judge a play date the same way you would with typically developing children. Simply being in the room and coexisting together can be a start. Kids need to learn social skills somewhere. As long as there is no aggressive behavior, two children with autism can learn social skills together.


14.    How do you teach empathy to a child with autism?

It is well known that many children with autism have problems with regulating their emotions. What isn’t as well known is that many children with autism do feel emotions strongly. However, they just don’t have the ability to understand, regulate or express emotions as well as typically developing children. This is all the more reason to work on it. For example, if a tennis player has a backhand that is the least effective part of his or her game, you work on that skill because it’s the one that is needed most – you don’t ignore it because it’s the worst shot. Children must first understand their own emotions before they can relate to the emotions of others. For example, you can tell them, “It’s ok to be upset. Everybody gets upset. It’s ok to be angry. Everybody gets angry.”


15.    How do disparities between receptive and expressive abilities, motor skill problems and sensory integration difficulties relate to delays or deficits in responding to requests by speech or actions?  

Many kids and adults with autism are mistakenly believed to have lower cognitive skills than they actually possess, but certain problems may prevent them from expressing their level of understanding. In other words, many children and adults with developmental disabilities may understand a request and want to carry it out, but sometimes are unable to do so.

Many people wrongly assume that autistic people do not understand how to do something or are unwilling to perform a task, when, in fact, many autistic children report feeling “stuck” within their bodies, and not able to feel their limbs in order to comply with requests. Research shows that, at some point there may be a disconnect between the signals that originate in the brain and end in the hands, arms and legs explaining this feeling of being “stuck” within their bodies.

Many children with autism also have sensory integration issues. For example, they may be able to hear fine and see at a normal level, however, accomplishing both of these tasks at the same time can be difficult. They may experience senses that are out of balance – the sense of hearing may actually be very acute, for example, while the vestibular (balance) and proprioceptive (position) senses may be off, which can make responding hard because of distractions.



My friend Chammi Rajapatirana (pictured above) was featured in the May 7, 2006 issue of Time Magazine because of his use of facilitated communication (FC).  I’ve witnessed him communicate through FC each of the more than 100 times that I saw him.  Chammi’s friends Sue Rubin and Jaime Burke also use FC.

 


[1]Definition of “trigger” from www.dictionary.com: Anything, as an act or event, that serves as a stimulus and initiates or precipitates a reaction or series of reactions.