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Autism Defined

Two Worlds Collide
OK, I’m assuming that you’ve come to this website because you are a parent/grandparent/caregiver/friend/neighbor of a child that either exhibits characteristics or has recently been diagnosed with an Autism Spectrum Disorder. Maybe you’ve just walked out of the doctor’s office and the doctor has suggested your child has a form of Autism. At this point, it’s likely that your eyes have glazed over, your mind is reeling from the possibilities of problems that are likely to come up, and maybe you’re even grieving for the child you think you’ve lost. I know because I’ve been there and I’ve had the same thoughts run through my brain and I was somewhat prepared to hear the word Autism. It’s one thing to think in your own head that something is just not quite right with your child and it’s quite another to hear a professional say it flat out to you. Hearing the diagnosis can be a wake up call, a validation to all your thoughts, or even a kick in the pants to get rolling on a treatment plan. More importantly though, you need to remember that an Autism diagnosis is not the end of the world; rather, it’s more of a beginning into a new one. 
 
The two worlds collide when you have a family who lives life in an unpredictable manner, or by the ‘seat of their pants’, raising a child who insists on the same routine day in and day out. It’s a little give and take from each side. You can’t be expected to live in a bubble with the same rigid routine hour-by-hour, minute-by-minute. Conversely, your child also can’t be expected to just ‘go with the flow’ from place to place or activity to activity just because it’s what you feel like doing—at least not without some type of accommodation or modification to your plans. The two worlds collide for the family that talks, talks, talks, and is raising a child who either doesn’t speak at all, or speaks in an unusual manner. The two worlds collide for the big, rowdy family that loves inviting other children over to play, only to realize your child would rather play or be alone.
 
Definitions
So just exactly what is Autism? The term is thrown around so much these days on the news, in the paper, on the bookshelf, and in the coffee shop that it can be hard to pick apart fact from fantasy. Everybody automatically thinks Rainman. In everyday language, it’s easiest to think of Autism in terms of a collection of strengths and deficits. The strengths a child can possess can be things like having a good memory, strong visual abilities, a wonderful attention to detail, and maybe some intense interests in things like numbers, flags, insects, and so on. The deficits are things like communication problems or a lack thereof, lack of social skills, problems with sensory processing and regulation, repetitive behaviors like jumping excessively or hand flapping, and an intense inflexibility with an insistence on routine. Everyday life can be difficult for these children and their families. Oftentimes, this difficulty stems from not understanding the other’s perception of the world. What’s important to you is not always important to your child. What’s instinctual for you is not always instinctual to your child. Bringing each other into the other’s ‘world’ can help bridge the gap sometimes.
 
It has been my experience in raising a child with autism that a lot of well-meaning (and some not so well meaning) people will tell you that whatever your child has a problem with that it’s normal and all children do that. This phrase, once heard a thousand times over, tends to get under your skin a bit. I have had therapists, neighbors, friends, complete strangers, all of them comment on my child’s behavior at some point and say, “well all kids do that”. Yes, I’m sure all kids throw themselves down on the ground and have a temper tantrum, but not all kids will do this for hours on end because you turned right out of the parking lot instead or left. I always responded to this phrase by saying, yes, all children do have issues with behaviors, repetitiveness, and routines, but the reason behind my child’s behavior and the extremes it presents itself as are not the same that normal children and their parents deal with.   
 
The Spectrum
When people discuss Autism they usually do so nowadays in terms of a spectrum. So, oftentimes a child is diagnosed with an Autism Spectrum Disorder. Sometimes a parent hears a rather confusing diagnosis of PDD-NOS or Pervasive Developmental Disorder-Not Otherwise Specified. That’s a mouthful isn’t it? Really though, it’s part of the same problem and we’re basically talking about a matter of degree of functionality. A doctor doesn’t diagnose your child with a ‘light’ case of Autism, that’s like being a ‘little’ bit pregnant! But in the same sense, most professionals think of Autism as a spectrum with a lower functioning end and a higher functioning end. 
 
At the lower functioning end, a child is going to need a lot of support, intense therapy, and may have more extremes of everything from a lack of communication skills to severe sensory problems. At the higher functioning end, a child may have some communication skills but lacks social skills, has sensory issues (sometimes subtle), and will still need a lot of support and intense therapy. Another term you may hear is Asperger’s Syndrome (AS).  Some people believe that Asperger’s is just a part of this spectrum but at the very highest functioning level. Others believe that is completely separate. At this point, the way a child is painted into a High Functioning Autism portrait versus an Asperger’s one is the presence of a speech delay. The definition of Asperger’s does not include a child who has or had a speech delay, and instead that child would most likely be labeled as High Functioning. What does this all mean to you? With a young child, not much. As a child gets older specific issues are going to pop up and the need to further refine all this might be necessary but at a young age, the treatment options are pretty much the same.
 
There are some other syndromes and disorders that are included in the same discussion as Autism Spectrum Disorders and that includes Rett’s Syndrome and Childhood Disintegrative Disorder. I have no experience with these two and I would recommend finding specific information on these two diagnoses as there are further specific problems and issues that will need to be addressed. Also, I would just like to briefly touch on the issue of Savants. Earlier, I mentioned Rainman as the quintessential idea of what most people think Autism looks like. In the movie, Dustin Hoffman portrayed an adult with an Autism Spectrum Disorder and Savant Syndrome. Savants are quite rare—there are only about 100 recognized savants in the entire world, not all of who have an autistic disorder. However, if you happen to watch Rainman you will see behaviors and rituals that are a part of living with Autism. He has to watch certain shows at specific times, no matter what. He is easily overwhelmed by new situations and experiences. He has poor eye contact and rarely looks others square in the eye. He has self-stimulatory behavior and rocks quite often. He doesn’t relate to others well, doesn’t get the ‘joke’, and doesn’t understand social cues. All of these are things young children, teenagers, and adults with an Autism Spectrum Disorder experience. 
 
Co-Existing Conditions
There are also a multitude of co-existing disorders and issues that can go along with an Autism Spectrum Disorder. Seizures are the first to come to mind. There is a much higher incidence of a seizure disorder in a child with an Autism Spectrum Disorder than in typically developing children. This is especially true during the years around puberty. A good initial evaluation when a child is suspected of having an Autism Spectrum Disorder would consider the presence of seizure activity. Seizures that are left untreated can drastically change the way a child on the spectrum will develop. Another common condition associated (and sometimes confused) with an Autism Spectrum Disorder is Apraxia. Apraxia is often associated with Autism because of the motor planning aspect to it. Apraxia is a neurological disorder that effects how a child plans, programs, and produces movement. Many children need to treatment that will address the problems with motor planning associated with speech (how am I going to move my mouth to say ahhh) and motor planning of movements (how am I going to lift my legs to walk up the steps). 
 
Children on the spectrum can also have issues with sleep, eating and gastrointestinal issues, and other psychological disorders like OCD, ADHD, Bipolar, and others (although it’s difficult to separate what’s part of Autism and what’s something else). A child with an Autism Spectrum Disorder can have your run of the mill problems like asthma, allergy, diabetes—pretty much all the things typically developing children can have too. 
 
Treatments
There are lists and lists of behaviors and routines that families with Autism must deal with and I know from experience that an Autistic child’s rituals and behaviors are beyond difficult. There’s an overwhelming need to do something but most parents don’t know what that something should be. Other parents of children with Autism that you will meet by chance or at the local support group will all have their own ideas about the best therapy, the newest therapy, and unfortunately you might hear about what ‘cured’ their child. Most of the time, families dealing with an Autistic child are concerned about the BIG THREE, speech is numero uno, then comes behaviors (especially social ones) like making eye contact, screaming, hitting, or worse, and finally all the sensory problems that go hand in hand with Autism. Unfortunately, some people find that all these are disconnected from one another and therefore, deal with all of them separately. The BIG THREE can be integrated and connected to every part of life. Speech is not taught only in the nice and quiet therapy room or classroom. Behavior is taught in a variety of settings not just during ABA sessions. Sensory integration is not only done in the clinic with the OT. Because children on the spectrum usually have a lot of different therapies or treatments they are involved in, we have to take what we learn in these sessions or from the professionals and apply it to every aspect of life. Whatever treatment you find ‘right’ for your child needs to be intensive. I believe that’s why ABA (Applied Behavioral Analysis) makes good progress with so many children—because it requires someone to interact with a child for 40 hours of therapy a week or more.  Anything you do, speech therapy, occupational therapy, whatever needs to have the same level of intensity. Does that mean your child sits in a speech or occupational clinic all day—no. It means the majority of the work and fun has to be done by parents and caregivers and it has to be functional. Having functional goals for your child, especially for the very young child, is essential. In order to ‘integrate’ treatments and increase the intensity by working at home can be done in conjunction with your therapists. Any good therapist is going to be share and explain your child’s goals with you and help you find ways outside of the therapy room to accomplish them.
 
Currently, there are a whole host of treatment options out there for children with an Autism Spectrum Disorder. Some are good, some are bad, and some are just plain wacky. Anything that promises to ‘cure’ your child is something to be wary of, because at this point, there is no known cure for autism. Let’s get it out to everyone that Autism is a life-long disorder, you don’t stop being autistic, and you don’t grow out of it. What children do learn as they get older is how to communicate effectively often through intense speech therapy, they learn coping skills on their own or through occupational therapy, and they learn appropriate social behaviors through practice and preparation. All these children can learn, cope, and adapt when they must, to functionally be a part of society.
 
The important thing to remember when reading through the reams of information about treatment options is to consider YOUR child and your child’s strengths and deficits because NO two children with Autism are the same. What works for your neighbor’s child may not work for yours. Heck, even siblings, both with Autism, may benefit from two very different types of therapy. It’s hard nowadays to find non-biased information on treatment options; everybody’s got their own spin to what’s available. I would suggest consulting the Autism Society of America for a rundown on what’s currently available. I would also recommend the book The Source for Treatment Methodologies in Autism by Dr. Gail Richard (ignore the scary title, it’s a good informational source and it includes case studies). It’s a comprehensive breakdown treatment by treatment and is a good starting point when searching for a treatment plan with professionals working with your child. 
 
MUST HAVES
The first thing I think doctors and professionals should have to do after telling you that your young child has an Autism Spectrum Disorder, is hand out a list of MUST HAVE items. Although it’s probably true that everybody’s ‘must have’ list is going to be a little different, this is what I would suggest for parents and caregivers: a digital camera with good zoom lens, a computer, printer, and internet connection, maybe a video camera (I still don’t have one!), and a Sand & Water Activity Table. With these few core items, you can access information, create information, connect with families and professionals, order equipment online (then you don’t have to transition to the store!), and provide a place for some safe sensory play in your house without getting it on your floor. Of course, there are tons of other items parents end up needing and buying, but this is my list of ‘core’ essentials.
 
How This Website Can Help
This website is broken down into sections, each explaining the strengths and deficits of children with an Autism Spectrum Disorder. These pages are written in a family friendly manner that will help explain the reasons behind what you might be seeing with your child and what can be done to help. The sections we have cover communication issues, social skills, behaviors, self-stims, sensory problems, feeding problems, teaching strategies for young children, and we have sections for parents and caregivers about dealing with stressful situations like daily routines and holidays. So please, explore the website and find more in-depth information about what it’s like to have an Autism Spectrum Disorder and what it’s like to live with someone who does. However, if you still feel like you need the heavy-duty professional definition of Autism, please consult your doctor for a clinical definition from the DSM-IV (a manual used by professionals).