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Is Autism a “popular fad diagnosis”?

By on July 22, 2011 in Autism

Recently, Dr. Allen Frances made the comment that Autism was becoming “fashionable” or a “popular fad diagnosis.” Before you read further, I invite you to read his article in full to understand it in context.

Now, many people, even after reading it in context, were outraged. How dare he? Who does he think he is?

Hopefully I can help clarify some of it, at least, in terms of how I interpreted his statements. You may agree with me, you might not. That’s all ok either way. My only goal is to give you a possible new way of interpreting his meaning.

Who is Dr. Allen Frances?

First, I’d like to tell you who the man is because when I posted the link to this article in a few places, people were quite appalled and upset that this “ignorant” man would say such a thing. They questioned his qualifications and suggested he look up the word “spectrum” in the dictionary.

For those that don’t know, Dr. Frances is not just a notable doctor, he was the man in the big chair of the committee that defined the DSM-IV(4).

The DSM is the Diagnostic and Statistical Manual of Mental Disorders… what you and I would call, the guidelines to diagnosing disorders such as Autism.

He was the man responsible for the introduction of Asperger’s Syndrome into the Autism spectrum.

So yes. He’s qualified.

Fad Diagnosis?

Most people read this one statement and immediately assumed that he was saying people were being diagnosed to be cool or popular. Obviously that is not his intention at all as it’s fairly obvious that no one would do that. The general population see disorders such as Autism, Schizophrenia and so forth as negative things… as something they really do not want to be associated with. (most people hear “disorder” and think “crazy”… which is sad, but true)

What he more likely means is that Autism has taken over mainstream media to the point where people discuss Autism around the water cooler now. Every parent wonders about it, every new parent fears it, schools need to be aware of it and anyone within the Autism community promotes it’s awareness.

As a result, people are looking for it. And we all know, when you look for something hard enough, you begin to see it even though it’s not really there.

Milder form? What?

What he is saying, I think, is that Autism was never really supposed to have a “mild form” or “mild presentation,” as he states in the article. That is to say, either you’re very clearly Autistic or you’re not.

The DSM-IV was designed such that you’d fit a certain number of criteria to be diagnosed. That is to say, you must have several impairments and thus, be considered disabled. You read that right, disabled.

However, by including Asperger’s, he allowed for people with “milder” symptoms to qualify for the diagnosis which means that individuals who show some signs yet are not disabled now qualify.

That’s not to say that all individuals with Asperger’s are not disabled… many clearly qualify which is why there is such a classification in the first place.

The problem is that there is no clear boundary set any more which means that a lot of people fit the bill.

Real life example

Emo Care BearTake your average rebellious, down trodden teenager who hates school, has no friends and doesn’t feel like they fit in. Sometimes they’re “emo”, sometimes they’re “goth”….  sometimes they’re just kids.

The question becomes… are they just being miserable or are they Autistic?

I could argue that pretty much every single “emo” person out there qualifies to be diagnosed with Autism or at the very least, Asperger’s.

Are they? No.

At least, certainly not all of them. Most move on from that phase and go on to be normal (semi normal anyway) adults with a regular life.

But as the DSM-IV stands, or at least the way it is interpreted today, every single rebellious, not fitting in teen, could be diagnosed on the spectrum!

See how that could be considered a “fad diagnosis?”

To make matters worse

Doctors are under a great deal of pressure when a parent faces them with a child that isn’t reaching milestones or is having issues… if a parent is convinced that something is wrong, the doctor stands there with a decision to make. Is the child just not smart, is that parent truly just a bad parent… or do they fit on the spectrum enough to squeeze them a diagnosis so that they can get some therapy/help?

This article is from a tabloid newspaper so it needs to be taken with a grain of salt, however, if even a shred of it is true, it’s easy to see how something like this could be perverted into a method to gain funds or help in other areas.

Autism is the popular disorder right now, it is beginning to gain traction with governments and insurance agencies. If money gets channeled to this area, parents and doctors could find a way to squeeze children into a diagnosis that gets them the help they need.

It may get worse before it gets better

In May 2013, the DSM-5 is scheduled to be released with even more major changes. Keep in mind however that it’s still going to be a while before it’s complete so the proposed changes are not final as of yet.

The DSM-IV introduced Asperger’s into the Autism Spectrum and now, the DSM-5 plans to wipe out Asperger’s entirely. Yes, you read that right.

Proposed changes include removing classifications of various disorders and syndromes in preference of using a “severity scale“. I use quotation marks but that’s what I call it.

Essentially, you’ll be given a diagnosis as Level 1, Level 2 or Level 3 which will determine the amount of support you’ll need. Click on the “severity scale” to read more on it from the official site.

So the whole issue with having “mild presentation” will once again become even more… milder? Uhmm… more people will fit the criteria. That sounds right.

And don’t think these changes are limited to the Autism Spectrum. Several types of schizophrenia will also be removed.

You can read the actual DSM-5 site here, if you don’t easily fall asleep while reading science speak.

PS. For anyone that noticed and is wondering… up to and including the DSM-IV, they used roman numerals but have decided to do away with that and use regular numbers starting with the DSM-5. So it’s not just me flip flopping… honest.

Back to the fad diagnosis

So yes, I can understand the outrage that many people felt because it was almost as if he was calling us liars… telling us that we had our children diagnosed just because we thought it was the popular thing to do and not because our children really are Autistic.

But I can assure you, at least from my understanding of it, that it was not his intention at all. Those who clearly fit the criteria and are deserving of a diagnosis have nothing to be offended by.

My son is very clearly autistic, he very clearly fit the criteria… he still does.

Perhaps that is why I did not take offense.

Clarification

To clarify and conclude, Autism is a disorder that is considered a real disability. It impairs many, or even all, aspects of your life.

The question is, are those who have difficulties and struggle qualified to be on the spectrum? Are they truly disabled? Are they truly impaired?

What do you think?

Do you think that people are being diagnosed a little too freely today?

Maybe the boundaries of what is and isn’t Autism should be confined a little more?

Do you think he meant something different than my interpretation? And if so, what did you take from it?

I’d love to hear from you.

Comments { 17 }

This is Autism, in plain English

By on July 20, 2011 in Autism

Allow me to explain, in plain English, what autism is. If you have any interest in learning about autism at all, please give this a read. I’ll even keep it short (well, compared to a textbook anyway).

Technically Speaking

To start at the top, there is PDD (Pervasive Development Disorder) which is a group of disorders including Rett’s, Childhood Disintegrative Disorder and ASD (Autism Spectrum Disorder).

Within the Autism Spectrum Disorder, there is actually another group of disorders including:

  • Autistic Disorder (also called “classic” autism)
  • Asperger’s Syndrome
  • PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified or “atypical” autism)

So being “on the spectrum” and “having autism” may not mean exactly the same thing although some people, even professionals, may use them interchangeably.

I should also mention, Fragile-X is a genetic syndrome that is not autism but may cause autism.

Something I need for you to know

First and foremost, you need to understand that every single person that is on the autism spectrum is different. That means that every single symptom and situation is different.

From here on out, everything I tell you may affect a lot of autistics but not all.

Common Symptoms

  • Communication Impairment
    This can be broken down into a few areas, such as:
    – Literal Thinking. This happens when a person is unable to, or has great difficulty, in understanding such things as irony, sarcasm, metaphors, expressions, etc. To use a phrase such as “I laughed my head off” would be interpreted by an autistic literally, they picture that your head actually came off.
    –  Inability to Understand Non-Verbal Queues. Many autistics explain that they are unable to tell what others are thinking by reading facial expressions or body language. Recognizing a person’s emotions is very difficult unless stated specifically and literally.
    – Anxiety. Extreme fear of social situations often makes socializing near impossible. Autistics often prefer to avoid social gatherings despite having a strong desire to be a part of them. Autistics often feel like foreigners, speaking another language, in a place where they do not belong.
  • Sensory Processing Disorder
    Despite being a separate disorder, SPD (Sensory Processing Disorder) is quite common among those with autism. This is broken down as such:
    – Hypersensitive.  Autistics often have an aversion to loud noises, lots of noises, bright lights, flickering lights, scratchy clothing (such as wool, seams), strong tastes, food textures and more. Anything that can overload the senses. Sometimes a simple hug can feel very painful all over.
    – Hyposensitive. Often times, people with autism have a high tolerance for pain, sometimes not even realizing that they’ve been hurt.  The same is sometimes true of all of the five senses. While a person may hate being touched at times, sometimes they have an overwhelming need to be touched. Often weighted vests, blankets, etc can help.
    – Filter. While not a sensitivity, often the brain lacks the filter that most people have to remove background sounds, smells, sights, etc.  For example, when you go into a restaurant, the music, kitchen sounds and other people talking all fade to the background so that you can hear the people you are talking to. With an autistic person, this is sometimes impossible… they hear it all at the same time, at the same level and become overwhelmed.
  • Routine / Repetition / Patterns
    An early warning sign is a child’s need to follow a strict routine, make repetitive sounds or actions to excess or to create patterns out of objects rather than play with them.
    – Routine. All children need routine but children with autism especially need it. A break in routine can leave a child feeling completely lost, out of control and overwhelmed with anxiety. The severity of this varies greatly.
    – Repetition. Children with autism often repeat words, sounds or actions over and over again for much longer than what you would call a phase. These are usually single words, small sounds or small actions… repeated over and over again.
    – Patterns. Often children will line up cars in a straight line, put their cereal into grids or lines, single out single elements from a more complex pattern or anything else along similar lines. Rather than actually playing with objects, they’ll find more joy in aligning them somehow.
  • Stimming (Self Stimulating)
    Stimming can be defined as a person’s need to produce an output, a way to fill one, more than one or all of a person’s senses (input).
    – What is it? Stimming comes in many forms but some notable occurrences include arm or hand flapping, moaning, head shaking, spinning, hitting oneself, moving one’s hands in front of their own eyes and so on.
    – Why do it? Stimming is done either to satisfy a need for input, such as a craving for deep pressure or to hear something, or as a way to block out other input, such as moaning so they no longer hear all of the other noises in a room (fan, television, people, etc) or to feel deep pressure so that they no longer feel the scratchy fabric of their clothing. These are just examples of an infinite number of possibilities.
    – Stop it? Some people wish to stop their child from stimming which, depending on the circumstances, can be beneficial or harmful. If stimming is done for self satisfaction and interferes with their ability to perform needed tasks, stopping it may prove beneficial. However, if the person is stimming to block out other overwhelming stimuli, preventing them from doing so may lead to a meltdown.
  • Meltdown
    So what is a meltdown exactly? Is it just a temper tantrum? Can a child be disciplined out of it?
    – Temper Tantrum. A means to get ones way, or to express extreme dissatisfaction with being unable to get ones way.
    – Meltdown. A complete loss of control over one’s faculties due to overwhelming anxiety, fear, pain, sensory overload or other outside pressures. A meltdown is very much akin to a reaction one may have to being tortured.

Epilepsy/Seizures

Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body.

Sometimes seizures are noticeable but most of the time, they happen so subtly that it can not be detected by simple observation.

Wandering/Elopement

In 2008, Danish researchers found that the mortality rate among the autism population is twice as high as the general population. Often times, a parent reports looking away for only a brief moment to find that their child has wandered off. Often times, they are found in neighbor’s pools, nearby woods, on highways and more.

People with autism seldom recognize the fear or danger in wandering off from the comfort of their surroundings.

Severe vs Savant

As a spectrum, autism can range from one extreme to another where one person may not be able to speak, use a toilet or dress themselves to another person that can remember Pi to over 25,000 places.

In the past, a person was considered “severely autistic” if non-verbal but today we now know that a person can actually have a normal or even high IQ despite verbal or other impairments. This means that just because a person can not speak, use a toilet or dress themselves, that there isn’t a very smart individual in there wishing to express themselves.

Also, not all savants are autistic even though “autistic savant” is when we hear the term most.

While autism can be a life long, debilitating disability for some, and while it may provide savant, superhuman like gifts to others, the fact is that for the most part, autism is a disorder which leaves people somewhere in the middle. Unable to handle a regular classroom, social setting, conversation and more but able to live independently with proper treatment and therapy.

Why an autistic person might not look me in the eye

One common recognizable sign or symptom of autism is the person’s inability or desire to look at a person’s face, or look them in the eye. Several well known autistics have described the process as “taking thousands of pictures of a person’s face every time I look at them”.

This is understandably very overwhelming and so, to avoid being overloaded into a meltdown, sometimes they will refuse to look you in the eye.

Other times, it can be described as simply a social awkwardness where they feel too much anxiety or discomfort with doing so.

Also, as with everything, this is not true of all people with autism. You’ll find that a good number of autistics really have no problem looking at you.

Causes

Other than Fragile-X causing some cases of autism, no one knows the cause for the rest. Genetics and other environmental factors (which includes vaccines) are often discussed in the media but no matter what you’ve read, no one knows the cause with 100% certainty.

Treatments / Therapies / Diets

There are countless treatments available although ABA (Applied Behavior Analysis) is the most widely used and approved method.
The most common therapies that help children are speech therapy and occupational therapy.
Diets proven to have the most positive effects include the GF (gluten or wheat protein free) and CF (casein milk protein free) diets.

No one treatment, therapy or diet will work for all people with autism although most have met with some success with at least some people. Because of this uncertainty, there have been some people who take advantage of the situation and create “snake oil” remedies which cost a lot of money yet don’t really work.

The truth is, though, that because no one knows the cause, no one knows the cure. As of right now, autism is a life long disorder with no cure.

Everyone agrees that the best chance an autistic person has at an independent life is via early intervention, which means receiving a diagnosis between the ages of 2 to 3 followed by receiving therapy, treatment and other help as soon as possible while still in the early development stage of their life.

How can you help?

  • Be understanding. Reading this is a great first step. The simple fact that you have taken a moment to know some of the characteristics and symptoms means a lot to a person with autism or their parent. Now that you know what stimming is and why it probably should not be stopped sometimes goes a long way toward understanding the person that is doing the stimming.
  • Do not judge. When you see a parent with a child that is screaming on the floor at a restaurant or grocery store, don’t be so quick to think that they’re a bad parent or a bad child. Perhaps that child is autistic and having a meltdown due to outside stimuli which feels like a constant stream of pain… such as torture. If you felt what that child has just been feeling, you may react in the same way. Autism can NOT be disciplined out of a person. It is hardwired in their brains.
  • Be accepting. If you know a child with autism, accept them for being different and needing to stim or be alone sometimes. If you’re at a party and you see someone on their own, be kind but respectful if they request to be left out of the group. If you employ someone with autism, give them a little extra room to cope with the crazy atmosphere around them and don’t be too hard on them if they avoid the X-Mas party. There are many ways you can adjust your own expectations to be accepting of their differences without having to necessarily give them special treatment.

So Remember

All people with autism are different. No one symptom is common among 100% of people with autism. No one therapy, treatment or diet works. Not all autistics are brilliant, not all autistics are non-verbal and not all autistics are dependent nor independent.

Chances are, you know someone on the spectrum and not even realize it. They may not even realize it either.

Please print this or copy it and share it with anyone wishing or willing to know more about autism.

Thank you.

Comments { 21 }

Some thoughts on taking a child with autism to a restaurant

By on July 19, 2011 in Autism

eating outOne of the harder things about having a child with Autism is dealing with the public. Whether it’s having to explain to other people, dealing with the judging stares or just giving up on the public entirely (no more eating out)… it’s a very hard situation to have to face.

Some people learn how to ignore the glares, cope with the meltdowns, avoid the meltdowns or how to accept that they just can’t go out any more. Others do not and constantly feel a heavy weight on them with which ever situation they find themselves in.

News stories such as this one don’t help matters. First, we recognize that society simply isn’t ready as most people don’t have the patience to tolerate a screaming child and second, it instills fear into other parents. They’ll be much more unlikely to take their child out for fear of suffering a similar embarrassment.

This post won’t have it’s normal, natural flow to it as I’m just going to give some random thoughts on this topic as well as, what I hope, are some useful tips.

Why do they have a meltdown?

With Autism comes a whole host of problems, such as social anxiety, fear of the unknown, sensory overload (patrons talking, kitchen noises, background music, air conditioner, bad lighting, smells from the kitchen, etc, etc, etc) and several other issues that may or may not be common for Autistic children.

You add that all up and it’s not a matter of if the child will have a meltdown, it’s when.

Taking a child out of their routine and out of their comfort zone is often enough to do it but when you add in everything else in a restaurant, it’s a recipe for disaster.

It’s not hard to figure out why a meltdown is likely to happen. The tricky parts involve knowing what specifically will be the final straw and also in anticipating the meltdown and either avoiding it or being ready to deal with it quickly.

First of all, do not be embarrassed unless they’re right

If people judge you to be a bad parent or mutter things about proper discipline… unless those things are true, you have absolutely nothing to be embarrassed about. Your child has Autism and is genuinely in a great deal of pain and fear, those people not only have no place to speak but they’re dead wrong. Therefore, why should you feel embarrassed?

You can feel bad about how society is or feel bad about having disturbed people but don’t feel embarrassed.

Start smaller than small

Like everything else, outings take practice. They just may take more practice for an Autistic child than for others.

Start in your own house. Put on some music while you eat, have your children be in the kitchen while you cook. Invite some family over and have a dinner where everyone talks at once… but be sure they’re all in on it so they know when to tone it down.

A few of these (the amount of duration dependent on your child) and you should be ready for an outing! But, maybe not to DisneyLand yet.

First, go to the corner store, a department store… just places with people. And when you’re ready for a sit down, start small again with a diner or cafe.

There are less people, less sensory issues and if something does go wrong… there’s less people to annoy and an easier out.

Most importantly, don’t be disappointed at the failed attempts. They’re not failures. They’re practice runs. You may find yourself leaving before you’re done your meal but 2 or 3 attempts and you’ll find yourself leaving before dessert. A few more times later, you’ll be leaving during dessert… and finally, leaving after the food is done.

From there, you’re not done… you move up to a bigger restaurant.

It’s practice… it’s a slow process… it’s not “normal” or what others will tell you is “normal” but you know what? It will get you there.

Every good plan needs an escape route

For all those practice runs and even for the finished product, you need an escape route. A way out if things do go south.

It’s up to you to plan it but try to keep things in mind like, how can the child get out to the car quickly and safely and still have the bill paid? With 2 parents, this is easy enough. If you’re a single parent, you may need to prepare some more. Maybe let the waiter/host know the situation and if you need a quick out, to be ready for you.

Don’t take it for granted. A quick out can mean a much less difficult time for the rest of the day where as a child that feels trapped in there might not recover… meaning rough behavior and even a tough bed time that night.

Even adults with their Autism completely under control still feel a meltdown coming on sometimes and need to know they can get out of there as quickly as possible.

Remember, they’re not bad people

In the news article posted above, the business owner asked that the people leave because they were disturbing other people. The initial reaction to this is disgust because it’s not the child’s fault and people really should be more tolerant.

However, at the same time, you need to realize that this person is running a business where his customers expect a nice quiet atmosphere to enjoy their breakfast. The article doesn’t state how many screams or for how long they lasted but it truly is entirely possible that he was disturbing other people.

Whether the business owner was aware the child had special needs or not is not the issue. It’s a matter of common decency. It’s just about being nice to others.

The others could have and should have been nicer to the mother and her child, understanding that he’s not wanting to bother anyone but also, the mother needs to understand that intentional or not, it is disruptive and forcing everyone else to endure it is not all that kind.

And to pressure the business owner to have to choose between one disruptive customer and the rest that are being disturbed is not fair to him.

This is where the escape routes come into play. If your child is not stopping, if you may be bothering others… use that escape route, go do something else and try again another day. It’s called practice for a reason.

If it’s just not going to happen, don’t despair

All the tips and practice in the world just won’t do it sometimes. Unfortunately, not every child is the same and that means that not every child is going to be able to cope with restaurants.

Find yourself a babysitter, get some respite… what ever you need, if you need your restaurant meals sometimes. Otherwise, save your money and eat in.

Your child will not miss out on life by not going into a restaurant to eat.  It’s unfortunate and I can sympathize but remember, you are sparing your child from actual fears, anxieties and even pain.

Sensory overload is a very serious problem that can be much worse than torture.

Your child isn’t just being a bad kid while out, they’re in pain. And you not going out really is for the best.

We’re all in different situations

We’ve either done well or not or we’ve had to give up… it’s a hard road either which way and we have reasons for being where we’re at. When we see others do something differently, it’s natural for us to question it or tell them they’re doing something wrong.

The truth is though that not every child will do well with practice, not every child should be kept home because of one bad outing.

Don’t feel bad, don’t feel embarrassed. Always have an escape route and do what you feel is best for your child.

Comments { 19 }

My little brother has autism

By on July 18, 2011 in Autism

After my last video, some people asked for a video from a child’s point of view. I thought about it from the point of view of Cameron’s brother and what he might say… this is the result.

I hope you like it:

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Reaching milestones is cause for celebration!

By on July 17, 2011 in Autism

Every parent praises and celebrates their child when they reach milestones. We’ve all heard people go on and on about how their child took their first steps, or said their first word… but when your child has autism, and you wonder if those milestones will ever be reached because you’ve long passed their expected arrival time… you don’t only praise your child for reaching them, you throw a party!

Well, ok, maybe not a party with balloons and noise makers but pretty close. A milestone isn’t just a right of passage for a child with Autism, it’s a major achievement.

Some children reach milestones right on time, some miss a few and some, sadly, never do reach some milestones through out their entire life.

That’s what we all fear, that’s what we all know is a possibility.

Cameron in the waterI’m very proud to say, because this is my mini celebration, that Cameron has been doing very very well leading up to his 6th birthday (in 11 days).

In the last month or so, he’s learned how to buckle up his own seat belt, he’s learned how to swim on his own (with a life jacket and noodle flotation thing) and he’s even learned how to get fully dressed on his own. Not just an item or two but we can give him all of his clothes and he does it.

Pretty big stuff for a little boy about to turn 6!! Even bigger for a little boy that couldn’t figure out how to press a button just over a year ago. He has come so very far, so very fast.

He’s determined, he LOVES being able to tell people about what he can do.

So, sorry for a brag post… but you know what? We all need brag posts. It’s time to celebrate and no one should ever feel shy or guilty for their child hitting those milestones. Shout it out loud!!

Besides, one day he’ll read this blog (I hope) and I’d love for him to know how proud I am of him.

Comments { 1 }