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Introduction Hello, my name is Stacy Goresko, Ph.D. I am an autism
professional and specialize in treating children, adolescents and
adults with
Autism Spectrum Disorders (ASD). Besides treating clients, much of what I do is to educate parents and professionals specifically about Autism Spectrum Disorders and what it means “to have” autism.
I began my Autism journey several years ago when my then two year old son was diagnosed with Autism. I did what every other parent does after receiving a diagnosis. I tried to get as much information as I could on Autism Spectrum Disorder (ASD). I surfed the web, I went to the library, I talked to parents and professionals. Before too long I was overwhelmed with information. I wasn’t sure what to do. It was a difficult time for me and my family. Now, years later with clarity and a sense of assuredness, I know that the best thing parents can do when receiving a diagnosis of Autism, Aspergers, or PDD-NOS,
is to fully understand what the disorder really is before starting a treatment plan.
Treat the Autism, not the Symptoms I say this because
you want to find a treatment that is really going to treat the autism.
Unfortunately, parents spend so much time, money and energy treating the symptoms of autism rather than treating the autism itself. Treating the symptoms may help on a superficial level, but this kind of treatment does nothing to remediate (remedy) the autism. Let’s look at an example. Let’s say your current three year old with autism has a very limited verbal repertoire of about 50 words. You are very concerned so you take him to a speech therapist who works on building up his vocabulary. At age five he is up to 300 words, the only problem is that there is no meaning to his language. He might be able ramble something to himself, or repeat over and over again the same phrase, however, a simple back and forth conversation is beyond his ability. His language is empty, void of any true connections to the world other than getting his needs met. Yes, we all use language to get our needs met, but more importantly we use language to connect to the social world. What we find is that very often a child on the spectrum can talk, but he still won’t know when and how to use language effectively with his family or with his peers.
For this reason, it is critical that parents understand what Autism is. If we understand what it is, then we can begin to treat the autism and not the symptoms of autism. Only when parents understand this disorder, can they be in position of empowerment which will lead to better and informed treatment decisions.
Below, I discuss what Autism is. I use the term “Autism” in the broadest sense to include most of the diagnosis under the umbrella of ASD namely, Autism, Asperger’s, Childhood Disintegrative Disorder, and PDD-NOS.
Back to top What is Autism?
In some ways, this may seem to be a
superfluous question. After all, if you are reading this article, it implies
that you probably have a loved one who is afflicted or likely to be afflicted
with Autism, Asperger, PDD, etc. There is nothing academic about the fact
that your special person is different. You observe aberrant behavioral, cognitive,
physical and emotional manifestations daily. And you want to cure their symptoms.
It is with this thread of thinking that
over the years (approximately the past half century), we have seen the emergence of a
number of skill based interventions that view Autism and
approach treatment as the sum
total of the symptoms. The primary sentiment has been that your
loved one needs the skills to cope with and to manage in our task oriented,
imperative culture. One of the most fundamental gaps we see with most ASD
people is their lack of "functionality" and their inability to communicate in
ways that you and I take for granted. Their ability to learn and to participate in a creditable fashion
is as a result severely reduced. Popular skill based interventions are ABA, speech
and occupational therapy to name a few. I personally have sent my son to a
variety of speech and occupational therapists who have worked with him and
helped a great deal. As important as these skill based interventions are, they
can only go so far to addressing the fundamental issues of autism. Why?
Because autism is not the sum total of symptoms any more than the common
cold is a sneeze or a runny nose. Ready for this? Autism is not a social, language, sensory or behavioral disorder. Let me repeat. Autism is not a social, language, sensory, or behavioral disorder. Although these may be manifestations of the disorder, they do not define autism at its core.
So, what is autism? Very simply, autism is a brain disorder. It is a brain disorder whereby the neurological pathways of the brain are impaired resulting in the inability to process information properly or efficiently. In other words, autism is a neurological, cognitive processing disorder. Basically, this means that people on the Spectrum are not able to adequately organize themselves based on the environmental feedback they are receiving. Whether you realize it or not each one of us is constantly processing information we get from our brain every moment of our day. We are being bombarded with stimuli from our environment and we rely on our brain’s processing of this information to store it or organize it in a way that allows us to function normally in our world. For example, when it is cold
outside a message is sent to our brain, “Hey, it’s cold, better go grab a coat.” Or, you meet potential boss for the first time and your brain tells you, “I had better make a good impression here.” But, imagine that it was cold outside but your brain wasn’t registering the information, or, that you didn’t realize that making a good first impression matters. Unfortunately, this is what it is like for people with Autism. People on the Autism Spectrum don’t behave, act or respond in typical ways because the information they need to be able to do this simply isn’t being processed. In other words, they don’t have a brain that is working properly and, therefore, are unable to process information in a sufficient, productive manner. This is the reason why people with Autism have such a difficult relating to other people and their environment. The hardware in their brains is not functioning accurately. This
under functioning of the brain gives way to critical areas of deficits.
Back to top What are the
Core Deficits of Autism?
The Critical Areas of Deficit of Autism Spectrum Disorder
1. Social Connectedness
People who know people on the Autism Spectrum often notice their lack of social connectedness. This lack of social connectedness is a major deficit for ASD individuals. As mentioned previously, people on the spectrum use language to get their needs and wants met. However, if we stop to really think about it, the true purpose of communication it not to get our needs met, but rather to connect with other people. Think, for example, when something really great or horrible happens to you. What do you do? Your immediate instinct is probably that you want to tell a significant person in your life what has just happened. This is because we humans have an innate desire to share our social worlds with others. I can think of so many examples throughout my day when I feel like calling up or emailing my husband, mother, or friend to share to talk about my day or talk about what the kids are doing. It is natural for people to want to share their thoughts and experiences with one another. People with autism either do not have the motivation to share their world with others, or if they do, they don’t have the skills they need to do it. Either way, social relationships prove to be significant hardships.
2. Being Flexible
The ability to think flexibly is another area of significant deficit for most people with Autism. People on the Spectrum tend to see life in black and white. They are good at following rules and like the structure and predictability they entail. Unfortunately most rules in life get broken and we live in a world where many things are not so predictable and it requires us to think on our feet. Rapid changes and coming up with new solutions is not something a person on the Spectrum feel comfortable doing for the most part. In a lot of ways, ASD individuals appear to be “stuck” in their thinking. They can be extremely inflexible even for things that for most of us seem so insignificant. I can remember when my son would only eat his chicken nuggets if it had one strip of ketchup on it. He would have a fit if we, God forbid, didn’t have any ketchup in the house, or if I put the ketchup on the side of the nugget instead of on top of it. To him, having it the way he wanted was of the utmost importance. Living with someone who is so inflexible can prove to be extremely challenging.
Back to top 3. Self Control and Awareness
Most of us have a sense of who we are and how we identify ourselves in the world. This is not the case for people on the Autism Spectrum. They are not able to understand that they have an identity that defines them and that how they show up in life affects not only themselves but how other people react to them. More simply put, people with autism don’t realize that their behavior impacts who they are and how other people perceive them to be. This is due to the lack of self monitoring that is required. For example, if someone comes up to you and gets too close, we automatically move back. To an ASD individual, they might not realize that 1) they are too close to you, and 2) that you have taken a step back to repair your personal space. They lack the self awareness. This can cause numerous hardships. The intricate unspoken social rules are typically violated. They can also lack appropriate self control when things don’t go their way. It’s kind of a vicious circle; they are unaware of their behavior so they can loose control which, in turn affects their behavior
and the behavior of others around them. It is important to note here that I
am not speaking of lack of control in terms of physical harm to themselves
or others. Very few people with Autism Spectrum Disorders have violent
tendencies. As in the typical population, this is the exception, not the
norm.
4. Evaluating One’s Environment
Whether we realize it or not, each of us is constantly monitoring our environment on a moment-by-moment basis and then making adjustments accordingly. Take for example the following scenario. You leave the house on a bright warm sunny day. By late afternoon however, it begins to rain heavily and there is a chill in the air. What do you do? You take out that umbrella you have stashed in your bag or car and put on the extra sweater you brought for times like this. Seems pretty straight forward, right? Not if you are a person on the Spectrum. Being able to assess changes in the environment and then having to adapt to these changes is not an easy task. I mentioned earlier that having autism means not being able to process information efficiently. If you are unable to process information appropriately, then it would make sense that you would be unable to evaluate your environment and respond accordingly. It is very difficult for people with Autism to know where to put their attention and focus. We have so much stimulus being thrown at us, knowing what is important information versus excess data proves challenging. When you are
at school and the teacher is talking, how do you know what and what not to put in your notes? To a child on the Spectrum, they might think that everything the teacher says has equal value. Those of us who are not on the Spectrum are able to sort out what kind of things we
need to know, versus the kinds of
things that we can let go of. You can see how overwhelming it can be for these
children. Not having the ability to filter through information can be
frightening not to mention exhausting.
Back to top 5. Having Meaningful Memories or Motivation
People on the Spectrum have memories. In fact they can have great memories. Some
are even geniuses in this area. They can memorize facts without any problem.
They can also remember things that they did. What is more challenging however,
is for them have meaningful memories. By meaningful memories I mean the ability
to take away a memory from the past and using that memory for adjusting to the
present or the future. This is a bit complicated so let me give you and example.
Suppose your at a restaurant with your family and you buy your ASD child a milkshake. He has never had a milkshake before and gets
upset when you suggests that he drinks some. After several attempts, he finally take a sip and realizes it actually tastes good so he drinks it. Everybody is happy. Two weeks later however you and your family go to another restaurant and you buy your son a milkshake. After all, he liked it before. Much to your dismay, the milkshake arrives and your child throws a fit when you tell him to take a sip. What’s going on? There is a lack of a meaningful memory. The memory of having the milkshake was encoded perhaps, but the memory of having the milkshake and enjoying it was not encoded. You child acts as if he never had a milkshake before and is really mad that you expect him to drink it.
Basically, children on the spectrum can have memories, but they don’t have subjective memories from which they will learn from. This creates an atmosphere where they don’t have a desire or motivation to try new things. Why don’t they want to try new things? Because they don’t have the memory that reinforces the motivation to push themselves. After all, what is motivation based upon? Motivation is based upon the desire to do something that we have encoded as meaningful in our minds. Motivation typically comes from our past experiences. We are motivated because we did something in the past and want to try it again. When we think about it, without meaningful memories ASD individuals are stuck in a world that thwart their cognitive growth. They would much rather stay with situations that are the same or predictable rather than to push themselves into unknown situations. Unfortunately their innate drive to push themselves isn’t there as it is for most of us. They are left with their memories where things stay the same. This can lead to severe consequences.
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