Today is National Children’s Mental Health Awareness Day, which raises the question: Is autism a mental health diagnosis?
When my daughter was diagnosed a dozen years ago, her developmental pediatrician referred to it as a neurodevelopmental disorder. Later I heard it described as “neurobiological”. Yet I was told there is no medical test for autism and that it was diagnosed based on observation of behavior. Still later, I read about autism as a psychiatric disorder and many of the therapies I researched were based in psychology.
Such is a parent’s quandary: Is anything about autism clear-cut?
In this case, the answer is that there are many ways of looking at and describing autism depending upon which lens you use to view this incredibly complex disorder.
Autism is a brain-based disorder with onset in childhood that affects a child’s development in the core areas of communication, social interactions and behavior. This is perhaps best captured in the term, neurodevelopmental disorder.
Diagnostic criteria for autism are found inThe Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-Text Revision (DSM-IV-TR), which is published by the American Psychiatric Association. The DSM-IV-TR provides a common language and standard criteria for the classification of mental disorders. Tools used to help a provider (both medical doctors and psychologists) make a diagnosis are typically clinical (e.g., patient observation and interview) and psychological (e.g., standardized psychological tests) in nature.
A child’s physical health may also be affected by conditions such as seizures, gastrointestinal distress, eating irregularities, sensory challenges, and sleep disturbance. These affect a child’s overall health and well-being and can be viewed as neurobiological. When you get right down to it, our brain is most definitely part of our physiology, no different than other vital organs such as our heart and lungs.
So there you have it: the many terms used to describe this multi-faceted disorder continue to provide us with more questions than answers. For now, the diagnostic criteria for autism will continue to be described in the DSM and this disorder should be thought of as a condition that can be described and viewed many different ways.
As the DSM is currently being revised (DSM-5 is due out this month), also stay tuned for updates about changes to the current diagnostic criteria.
For more specific information about the diagnosis of autism, Autism Speaks offers The 100 Day Kit.
I thought that the following excerpt, (sp?) from the “100 day kit” was well worth re-evaluating for even us experienced parents! I had a moment to pause when I read about my kid not fully understanding me hollering across a room to her…..
Cut/Paste Ten Things Every Child with Autism Wishes You Knew
By Ellen Notbohm
Here are ten things every child with autism wishes you knew:
I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism
is only one aspect of my total character. It does not define me as a person. Are you
a person with thoughts, feelings and many talents, or are you just fat (overweight),
myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be
things that I see first when I meet you, but they are not necessarily what you are all
about. As an adult, you have some control over how you define yourself. If you want to
single out a single characteristic, you can make that known.
As a child, I am still
unfolding. Neither you nor I yet know what I may be capable of. Defining me by one
characteristic runs the danger of setting up an expectation that may be too low. And if I
get a sense that you don’t think I “can do it,” my natural response will be: Why try?
My sensory perceptions are disordered. Sensory integration may be the most
difficult aspect of autism to understand, but it is arguably the most critical. It means
that the ordinary sights, sounds, smells, tastes and touches of everyday that you may
not even notice can be downright painful for me. The very environment in which I have to
live often seems hostile. I may appear withdrawn or belligerent to you but I am really just
trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for
me: My hearing may be hyper-acute. Dozens of people are talking at once. The
loudspeaker booms today’s special. Music whines from the sound system. Cash
registers beep and cough, a coffee grinder is chugging. The meat cutter screeches,
babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input
and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat
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counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is
handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re
mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously
nauseated. Because I am visually oriented (see more on this below), this may be my first
sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes
and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces
off everything and distorts what I am seeing — the space seems to be constantly
changing. There’s glare from windows, too many items for me to be able to focus (I may
compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant
motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell
where my body is in space.
Please remember to distinguish between won’t (I choose not to) and can’t (I am not
able to). Receptive and expressive language and vocabulary can be major
challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you.
When you call to me from across the room, this is what I hear: “*&^%$#@, Billy.
#$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put
your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to
do and what is going to happen next. Now it is much easier for me to comply.
I am a concrete thinker. This means I interpret language very literally. It’s very
confusing for me when you say, “Hold your horses, cowboy!” when what you really
mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is
no dessert in sight and what you really mean is “this will be easy for you to do.” When
you say “Jamie really burned up the track,” I see a kid playing with matches. Please just
tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference,
metaphors, allusions and sarcasm are lost on me.
Please be patient with my limited vocabulary. It’s hard for me to tell you what I need
when I don’t know the words to describe my feelings. I may be hungry, frustrated,
frightened or confused but right now those words are beyond my ability to express. Be
alert for body language, withdrawal, agitation or other signs that something is wrong. Or,
there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off
words or whole scripts well beyond my developmental age. These are messages I have
memorized from the world around me to compensate for my language deficits because I
know I am expected to respond when spoken to. They may come from books, TV, the
speech of other people. It is called “echolalia.” I don’t necessarily understand the context
or the terminology I’m using. I just know that it gets me off the hook for coming up with a
reply.
Because language is so difficult for me, I am very visually oriented. Please show m
how to do something rather than just tell me. And please be prepared to show me
many times. Lots of consistent repetition helps me learn. A visual schedule is extre
helpful as I move through my day. Like your day-timer, it relieves me of the stress of
having to remember what comes next, makes for smooth transition between activities,
and helps me manage my time and meet your expectations. I won’t lose the need for a
visual schedule as I get older, but my “level of representation” may change. Before I can
read, I need a visual schedule with photographs or simple drawings. As I get older, a
combination of words and pictures may work, and later still, just words.
e
mely
Please focus and build on what I can do rather than what I can’t do. Like any other
human, I can’t learn in an environment where I’m constantly made to feel that I’m
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not good enough and that I need “fixing.” Trying anything new when I am almost sure to
be met with criticism, however “constructive,” becomes something to be avoided. Look
for my strengths and you will find them. There is more than one “right” way to do most
things.
Please help me with social interactions. It may look like I don’t want to play with the
other kids on the playground, but sometimes it’s just that I simply do not know how
to start a conversation or enter a play situation. If you can encourage other children to
invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be
included. I do best in structured play activities that have a clear beginning and end. I
don’t know how to “read” facial expressions, body language or the emotions of others, so
I appreciate ongoing coaching in proper social responses. For example, if I laugh when
Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper
response. Teach me to say “Are you OK?
”
Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or
whatever you want to call them, are even more horrid for me than they are for you.
They occur because one or more of my senses has gone into overload. If you can figure
out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings,
people, activities. A pattern may emerge. Try to remember that all behavior is a form of
communication. It tells you, when my words cannot, how I perceive something that is
happening in my environment. Parents, keep in mind as well: persistent behavior may
have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and
gastrointestinal problems can all have profound effects on behavior.
Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t
she…..” You did not fulfill every last expectation your parents had for you and you
wouldn’t like being constantly reminded of it. I did not choose to have autism. But
remember that it is happening to me, not you. Without your support, my chances of
successful, self-reliant adulthood are slim. With your support and guidance, the
possibilities are broader than you might think. I promise you – I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my autism as a
different ability rather than a disability. Look past what you may see as limitations and
see the gifts autism has given me. It may be true that I’m not good at eye contact or
conversation, but have you noticed that I don’t lie, cheat at games, tattle on my
classmates or pass judgment on other people? Also true that I probably won’t be the
next Michael Jordan. But with my attention to fine detail and capacity for extraordinary
focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The
answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements
from today’s children with autism, children like me, lie ahead? All that I might become
won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll
see just how far I can go.
©2005 Ellen Notbohm
I found your post comments while searching Google. Very relevant information. Great work. Regularly I do not make posts on blogs, but I have to say that this posting really forced me to do so. Really awesome post. Really fantastic and I will be coming back for more information at your site and revisit it! Thank you.
The 100 Day Kit is terrific. I recommend all parents whose children have been diagnosed with Autism, or who feel that their child has Autism, read The 100 Day Kit. Very helpful info and stress reducing to both child and parents.