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Autism Doesn’t End At Five: Aaron’s Story

Today’s “Autism Doesn’t End At Five” series features the story of Aaron, who is four years old. Even if he reaches the top of the IBI waitlist before his fifth birthday, which is unlikely, he will only receive services for a short time before his age deems him ineligible.

autism doesn't end at five - aaron

Aaron was diagnosed with autism when he was just two years old. His mother had done the research: she knew that an early diagnosis followed by early intervention would improve her son’s chances of a good outcome. She was hopeful that now that Aaron had been diagnosed, she would be able to access services for him.

Instead, she found herself and her son being placed onto one waitlist after another. While Aaron is waiting his turn for IBI services, he is missing the developmental window identified by the Ontario government. Now almost four, he still technically qualifies for IBI, but considering that most children spend two years or more on the waitlist, he is unlikely to get to the top of the list by the time he turns five.

Aaron has been identified as being on the severe end of the autism spectrum. He has many challenges: among other things, he is non-verbal, he has limited eye contact, and he is not able to use the toilet independently. Many children have made tremendous gains in all of these areas thanks to IBI therapy.

In spite of his challenges, Aaron has many strengths for IBI service providers to build on. His mother describes him as a “puzzle wizard and builder extraordinaire”. This indicates the presence of strong problem solving skills and solid learning capabilities. Everything points to Aaron being an ideal candidate for IBI, and that is not going to magically change on his fifth birthday.

A year from now, Aaron will still be highly likely to reap enormous benefits from IBI therapy. But a year from now, the Ontario government will cut off his access to this critical therapy simply because of his age.

Aaron’s parents, who also have five-year-old twin girls, are now talking about private therapy. They refuse to give up on their son, but helping him is going to result in upheaval for the family. They are listing their home for sale in an attempt to pay for IBI therapy themselves. No family should have to go through this kind of stress – especially in a country like Canada, which prides itself on human rights and equal opportunities for all people.

“My heart aches for my son and I need to stay strong to be his voice in any way I can.” – Kelly, Aaron’s mother

By Kirsten Doyle. Photo courtesy of Aaron’s mother, Kelly.

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Autism Diaries: On This Day…

the autism boy

The Autism Boy

Thirteen years ago I was pregnant. The pregnancy was so new that nobody knew about it apart from me. I remember lying in bed hugging this secret close to me, this secret that I was sharing with no one but the baby growing inside me. I was terrified that my husband and I would experience a repeat of the loss we had been through just a few months previously. Stay with me, I silently begged the baby.

Twelve years ago I was a new mom. I spent time lying on a blanket with my months-old babe, holding his tiny hand in mine. I would look at his little fingers, at the curve of his cheek, and the fluttery eyelashes – and I would marvel at how something so small could be so perfect. I felt as if the future was a blank slate, just waiting to be written by this brand new human being.

Eleven years ago, I was a parent who had recently lost a parent. I held my one-year-old son, feeling immense gratitude that he had spent some time in his grandfather’s arms. I was afraid: when I lost my father, I lost a bit of my security. I somehow became more of an adult, and I wasn’t sure that I was ready for that.

Ten years ago, my little family had gained a new member. As I cared for my newborn baby, I worried about his older brother. I knew that something was not right, but the doctor said, “Wait. Give it some time.” When your instincts say one thing and your doctor says another, you have to decide which one to listen to. I listened to the wrong voice and waited.

Nine years ago, we had finally gotten the doctor to listen, and our firstborn son was on the waiting list for a developmental assessment. We didn’t need an assessment to know that something was wrong, but we were hopeful that whatever it was, it could be fixed. While we waited, we took our son to speech therapy and celebrated every single word that he uttered.

Eight years ago, my husband and I were trying to settle into our roles as autism parents. The initial shock of the diagnosis had worn off, and we were working our way through the labyrinth of government funding and services. At the same time, we were adjusting our dreams and goals to fit the new reality of autism.

Seven years ago, our autism boy was about to start his ABA therapy. It was a world that was completely unknown to us, a form of intervention that works for some kids but not others. Would it work for our boy? We had no way of knowing. A further assessment put him on the severe end of the autism spectrum, but we were urged not to lose hope.

Six years ago, we were one year into the ABA therapy, and we had seen our son make phenomenal progress. His vocabulary had exploded and we were starting to see the emergence of some amazing qualities. A follow-up assessment showed that he had made 23 months’ worth of gains in a 12-month period. Hope sprang eternal.

Five years ago, the boy was slowly, slowly being phased out of ABA therapy and into full-time school. We worried about whether the cessation of therapy would stall the progress we had seen him make. We were advised to expect a temporary plateau followed by slow but steady progress. Anything could happen, we were told. A full decade of school remained. A lot can happen in ten years. I held onto my rose-coloured glasses.

Four years ago, I suffered a devastating loss when my beloved aunt died in a freak accident. For the first time since the death of my father, I had to go away without my family. Leaving my husband and boys was excruciating, but I knew that I was needed on the other side of the world. The autism boy coped well with this big upheaval, helped enormously by his incredible little brother.

Three years ago, my stubborn optimism started to give way to realism. Yes, my son had many capabilities. He was doing well in his special ed program, and he was able to do things by himself, like get dressed and use the bathroom. He had come a long way since the days of his diagnosis. But there was still a lot that he couldn’t do. For the first time, I started to realize that in all probability, my boy would never attain complete independence.

Two years ago, we had to fight for our boy. The special ed programming at his school did not continue beyond Grade 6, and the placement he was slated for filled us with the horrors. The classroom – indeed, the entire school – was overcrowded and staffed with well-meaning but overwhelmed teachers. As I walked the hallways during my one and only visit, I detected an aura of barely contained hysteria. We were not going to risk the years of progress we had seen. And so, with my son’s principal by our side, we started a long series of meetings with the school board. And once again, we waited.

One year ago, the principal of my son’s school called with the news that the battle had been won. A special ed program for Grade 7 and 8 kids was being brought into his school – a school where the general student body forms a protective and loving wall around the special ed kids. I cried with joy, not only for my son, who was getting another two years in this amazing environment, but for all of the kids whose paths we had had a part in altering for the better.

Today, my son is in Grade 7, in his first year of the newly implemented program. He is doing well and continuing to make progress. I am happy with where he is, but I am afraid of where he is going. Because unlike the day of his diagnosis, when we had years of time ahead of us, we are now very close to the future we talked about then.

One year from now, the boy will be months away from finally leaving the security of the only school he has ever known. We do not know where he will be going for high school – that chapter of the story is starting to be written now. In the next few months – a full year ahead of when this would happen for typical kids – we will be starting to visit high schools, interview principals, look at special ed programs.

This year, next year, and for the rest of our lives, we will continue to do the best thing for our autism boy, to give him the opportunities he needs to reach his full potential – whatever that potential turns out to be.

This is an original post by Kirsten Doyle. Photo credit to the author.

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Team Sports and Autism: A Not-Impossible Dream?

One of the most poignant moments in George’s early childhood happened when he was four. It was a late summer’s day, about four months after he had been diagnosed with autism, and I was picking him up from daycare. On nice days the daycare staff took the children out to the playground at the end of the day, and parents would pick them up from there. This was one of those days.

I stood at the fence enclosing the playground, and for a few minutes I watched the kids at play. Five or six children, all around George’s age, lined up for an impromptu little race. Ready, set… GO! And off they went, for just a few yards. George stood by himself under a tree, watching these events shyly.

A sense of sadness tugged at my heartstrings. Although he was surrounded by children, he looked so utterly alone in that moment. The other kids weren’t excluding him, he just didn’t know how to join in.

Because this was so soon after George’s diagnosis, I was still mourning the loss of what I had thought family life would mean. That vision had included childhood birthday parties and Little League baseball teams. And seeing my kid standing there alone, not looking as if he would ever participate in anything – well, it hurt.

As George has navigated his way through nine years of life, I have been heartened to see how well other kids have responded to him. He has this aura about him – this sweet pureness – that seems to attract other children. While many nasty comments have been thrown his way by adults, I have never seen a child being mean to him.

Not once.

I am too realistic – or perhaps too jaded – to believe that this will continue. I have spoken to parents of teenagers with autism, and I have heard speeches given by adults with autism. And with very few exceptions, there is one common thread running through everything I have heard: high school is hell for people with autism. That is when the bullying starts, when kids with special needs get picked on and subjected to humiliation.

If that is the case, though, how do you explain this very cool thing that happened last summer when I was out for a leisurely walk with my family? The boys down the road – 15 or 16 years old – were shooting hoops in their driveway. As we walked by, the ball rolled into the street, and George picked it up. Like a true basketball player, he bounced the ball off his knee, and then threw it towards the hoop. He missed by a mile.

And with no hesitation whatsoever, these teenage kids – you know, the ones who are supposed to be mean to special needs kids – lowered the hoop so that George to join in.

Parents of kids with autism are very fond of talking about how society discriminates against their kids, and to an extent, this is warranted. George and I have both been on the receiving end of stares, rude comments, assumptions and accusations. But these have come from adults.

Maybe a segment of society is starting to get it right, though. There will always be high school bullies, but maybe the upcoming generation is growing up to be more intuitive to the needs of individuals with special needs.

Someone posted this delightful video on Facebook this week. Sit through the annoying ad at the beginning, and then grab a Kleenex and take a look. This is the kind of thing that gives me hope for my child’s future.

High school basketball player passes ball to mentally challenged player on the opposite team

(Photo credit: StuSeeger. This picture has a creative commons attribution license.)

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First, Do No Harm

Today I chose a bonus prompt in the National Health Blog Post Month challenge: offer advice to new doctors and nurses.

Congratulations! You have made it through medical school in one piece and you have taken a version of the Hippocratic Oath, in which you promised to do no harm.

As you hammer a nail into the wall of your office to hold your shiny new certificate, I have some words of advice for you, based on my own encounters with medical professionals over the years.

* Most of us have encountered doctors who think their medical degrees make them instantly superior to anyone else. They are the ones who are arrogant and condescending, and do not take into account that their patients are human beings with feelings. Don’t be one of those doctors.

* Most of your patients recognize the value of medication where appropriate, but please don’t over-medicate. Antibiotics are fine, but not every time someone sneezes.

* Just because my kid is energetic, that doesn’t mean he has ADHD. It just means he’s a kid. Don’t tell me I should medicate my kid for being a kid.

* If a mom tells you she’s concerned about her child’s development, don’t give her the run-around. Don’t make her fight for a referral, and don’t tell her to wait. That waiting can be costly to a child who could do very well with early intervention.

* Be gentle when handing down a child’s diagnosis to his or her parents. Remember that the parents’ lives are about to be changed by what you tell them. And remember that what the parent of a newly diagnosed child needs more than anything else is hope.

* Don’t keep your patients waiting. If someone makes an appointment for ten in the morning, they don’t want to wait until noon before you see them. Double and triple booking your patients tells them that you have no respect for their time.

* If you see people who seem wary and distrustful, don’t take it personally. It’s just that there are many “bad” doctors out there and some of us have been burned. If you treat your patients with kindness and respect, you will earn their trust.

What advice would you give to a new doctor?

(Photo credit: mrsdkrebs. This picture has a creative commons attribution license.)

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Guest Post: If I Look so Healthy, Why do I Feel so Rotten?

I met Simona Rinfreschi through the World Moms Blog community, and it quickly became apparent that we had a lot in common. We share many character traits and have had similar life experiences, and there is a good possibility that our paths crossed over twenty years ago when we both attended the same university, majoring in the same subject. As I’ve gotten to know Simona, she has shared with me some of her medical challenges, and she has graciously agreed to write a guest post for me today.

Isn’t it dreadful that, recently, I found myself praying that they would find something wrong with me?
I can see you shaking your heads.  Why on earth would you want an abnormal blood test result?  In my case, it’s simply because I’ve been battling severe pain and fatigue for 8 years already and so far nobody has really been able to help me!
My symptoms, combined with an absence of positive test results,has led to a diagnosis of Fibromyalgia. The medical dictionary definition of Fibromyalgia is:  ” a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body. The disorder is often misdiagnosed or unrecognized and is often complicated by mood and anxiety disorders.”
I’ve encountered two main types of medical professionals so far, those who think that Fibromyalgia doesn’t really exist and is a psychosomatic manifestation of my clinical depression,
(Definition of psychosomatic:
1. Of or relating to a disorder having physical symptoms but originating from mental or emotional causes.
2. Relating to or concerned with the influence of the mind on the body, and the body on the mind, especially with respect to disease)
and those who are happy to have given me a “diagnosis” even if they have no clue how to help me!
I actually find myself getting angry when they tell me I’m depressed, because I’m actually not depressed right now!  I did go through severe episodes of clinical depression as a teen and young woman, as well as post-partum depression following the birth of my son.  That’s how I know that this pain and fatigue is not caused by depression! I can remember quite clearly how I felt when I was depressed and I don’t feel at all like that now!
Ironically, psychologically, I’ve never been better!  Around 3 years ago I was hospitalised for 4 weeks in a psychiatric hospital. There I learnt how to get out of the pit of depression once and for all!
In the last 8 years I have spent a small fortune on medicines, blood &  other diagnostic tests, alternative therapies, supplements and consultations with a wide array of “specialists” including 2 psychiatrists, all to no avail!
I now find myself with a dilemma.  Do I simply accept that I have to live with this pain and fatigue for the rest of my life, or do I keep fighting and searching for a way to feel better?
Depending on the kind of day I’m having, I’m either willing to keep searching or I tell myself that it is what it is, and leave it at that!
So, this is how I’m dealing with my Fibromyalgia at the moment:
  •  I’ve come off most of my chronic meds (under medical supervision) because (since they weren’t really helping) I thought I’d save myself some money!
  • I’ve sent my medical records to yet another doctor for review, because it is possible to have Fibromyalgia and something else too!
  • I focus every day on all the things that I am grateful for
  • I do my best to listen to my body and eat what I feel I need to, rest whenever I can etc.
  • Ensure I have a good laugh at least a couple of times a day (luckily I have an amazing family & friends with a great sense of humour to help me with that!)
Like everything else in life, the diagnosis of a chronic disease or disorder per se isn’t what counts.  What counts is how you choose to live with it.  I know a couple of Fibromyalgia sufferers who don’t work at all and who are all “woe is me”.  I’d rather laugh …  and have my friends and family laugh right along with me!
Do you suffer from a disease or disorder which makes you appear perfectly healthy even though you’re not?  How do you deal with the fact that you get accused of being “lazy” or “faking” it because people can’t see the pain you’re in?
This is an original guest post by Mamma Simona (a regular contributor to World Moms Blog) who is the proud mom of two terrific teens.  She also shares her Cape Town home with a super supportive husband, 2 cats and 2 dogs. For more of Simona’s most intimate and candid thoughts,  feel free to check out her alter ego, Phoenix, at  www.blogbythephoenix.com
(Photo credit: Simona Rinfreschi)
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Guest Post: Living with Marfan Syndrome

When my friend Maya Brown-Zimmerman first said she had Marfan Syndrome, my first thought was, “Huh?” Marfan Syndrome is not something I had ever heard of. During National Health Blog Post month, I want to put a spotlight on some health conditions that affect other people – conditions that there may not be a lot of awareness of. Marfan Syndrome seemed like a good place to start, and I am delighted to introduce you to Maya, who tells about life as a “Marf”.

I’d like to thank Kirsten for the opportunity to share my story with you here today. She’s asked me to talk about Marfan syndrome and how it affects our family.

Marfan syndrome is a rare, life-threatening connective tissue disorder. Connective tissue is basically the glue that holds your body together, so most of the body can be affected, specifically the eyes, heart and aorta, lungs, skin, bones, and dura sac (which protects your spinal cord). The most dangerous aspect of Marfan syndrome is aortic aneurysms: weak bulges in the aorta that can tear, which is life-threatening.

Some signs of Marfan syndrome include a tall (in relation to your family) stature, being thin, having long fingers, disproportionately long arms and legs, scoliosis and kyphosis, lens dislocation, a concave or protruding chest, and stretch marks that appear in odd places, like the shoulder blades. There are not outward symptoms of aortic enlargement, so it’s very important to get a thorough scan of the heart valves and entire aorta via echocardiogram, MRI, or CT scan if Marfan syndrome is suspected.

I was diagnosed when I was 8 years old. My mother observed that I appeared physically unable to complete many gross motor tasks that other kids my age had mastered, like skipping or riding a bike. She took me to the pediatrician and told him she wasn’t leaving until he figured out what was wrong. Luckily for him (and me), he did! I’ll never forget him grabbing a tape measure and silently taking measurements, then standing back and saying solemnly: “I am so sorry. I should have realized this sooner,” before sending me off to have my diagnosis confirmed by a cardiologist and geneticist.

Marfan is a dominant disorder, meaning that I knew any children my husband and I would have, had a 50% chance of inheriting Marfan from me. Our oldest son, M, is not affected (though he does have autism), and our youngest son, J, has Marfan.

J and I are affected differently. He is almost 2 and by his age, I’d already had 3 abdominal surgeries. Thankfully, he is surgery free, but he has some mild leakage in his heart valves, asthma, and some GI issues. He also had global delays early on. Now he is only delayed in speech. He has mild dysphagia too, so we thicken all of his drinks. Although he will eventually have activity restrictions in order to protect his aorta and eyes, right now nothing holds J back! He climbs the furniture, chases his brother, and dances on the coffee table. He’s going to give me grey hairs, but I love his fiery spirit.

Growing up with Marfan syndrome was difficult for me. There was very little information available at the time and as I got older, I stood out from my peers more and more. I eventually connected with other “Marfs,” and have become very involved in the greater Marfan community (we refer to ourselves as the Marfamily). Currently I run the National Marfan Foundation’s teen program and am a member of their board of directors. While it took me until my teenage years to begin attending Marfan conferences and being involved with the Marfamily, J went to his first conference at 6 months of age. I’m involved with a tight-knit of Marfan moms of children J’s age, so he has a built-in group of Marfriends that he’ll grow up knowing. Since I was diagnosed, the life expectancy for people with Marfan has nearly doubled, such that with proper diagnosis and management it’s the same as the general population. It truly is a different world for J and his friends, and I am grateful and excited for that! I now view Marfan as a blessing in may ways, and I hope to pass on this outlook to my son.

If you have questions about Marfan syndrome or related disorders, please check out the National Marfan Foundation.

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and WebMD.

(Photo provided by Maya Brown-Zimmerman)

 

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There is No-one Alive Who is Youer than You

Although I am a bit behind on my prompts, I am participating in the WEGO Health “Advocating for Another” carnival, in which I describe our lives as an autism family.

Today’s prompt (OK, yesterday’s prompt): Quote, End Quote. Post – Let someone else’s wise words inspire you. Find a quote that moves you in some way then free-write about it. Don’t stop writing for 15-20 mins. Now post!

Dr. Seuss was a wise man. He had so many profound things to say that one could be forgiven for thinking he was a philosopher disguised as a children’s storybook writer. I am raising my children to live by the words of Dr. Seuss, because he really did have sound advice for every occasion.

A couple of years ago, I came to the uncomfortable realization that I had fallen into the habit of inadvertently defining my son by virtue of his autism. It was always the first thing I told anyone.

When asked about my family, I would volunteer the information that I was married with two boys. “My older son has autism,” I would say, as if my audience just had to know that about George.

The truth is that I have been so determined to be open about my son’s autism in order to knock on the head any notion that there should be a stigma attached to it. But I started wondering if perhaps I was doing my son a disservice by labeling him from the outset, and thereby creating an instant perception that was based on his diagnosis, and not on who he is as a person.

So I decided to change my approach. While I will never, ever make any effort to hide the fact of George’s autism, I no longer make a point of stating it up front. Because George is not just a boy with autism. He is a boy, a beautiful person with individuality and many great qualities, and he has the right for people to get to know him as such.

The subject of autism always comes up, and it never takes very long. I am always happy to talk about autism and the challenges of special needs parenting, but now it is something that arises naturally in the course of conversation. I no longer treat it as the central element to my son’s existence.

I want George to grow up knowing that he is loved and valued because of the person he is. There is no-one in the world like him, and every day I thank my lucky stars that I’m the one who gets to be his mother.

(Photo credit: Brendan-c. This picture has a creative commons attribution license.)

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Beyond The Stars

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 29 – Six sentence story: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?

When my son George was diagnosed with autism, I didn’t really know what it meant or what he would ultimately be capable of.

I didn’t know what it would mean for my family, or for George’s sibling relationship with his little brother.

Since then, we have discovered that George has potential that reaches beyond the stars, and that all we have to do is help him get there.

We have discovered that he has a big  heart with an infinite capacity for love, and that he and his brother will be best friends for life.

There are challenges, and I worry about what the future could bring for my boy.

But I believe in him absolutely.

(Photo credit: http://www.flickr.com/photos/gsfc/5161800961/. This picture has a creative commons attribution license.)

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Mother Knows Best

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 17 – Learned the hard way: What’s a lesson you learned the hard way? Write about it for 15 today.

I first started having doubts about our family doctor when he kept telling us that there was nothing that could be done about my husband’s sciatica. It was a very disappointing thing to hear: although not a life-threatening condition, sciatica had been giving my husband a whole new kind of agony for a couple of years, and now we were hearing that he would have to live with it for the rest of his life.

It seemed improbable.  What about physiotherapy, or if we were really pressed, surgery? What about a simple MRI scan or a referral to a specialist?

But my husband’s family had been seeing this doctor for years, and they seemed to have complete faith in him. My husband was resistant to my suggestions to see another doctor.

A few months later, when I was hugely pregnant, I took my older son to the same doctor for his two-year check-up. All of the vital signs looked good. George was in healthy percentiles for both height and weight and he was not showing any signs of illness.

With the main purpose of the visit accomplished, I said to the doctor, “George isn’t talking.”

Indeed, George wasn’t talking. The only words that he used in a contextually appropriate way were milk, juice and jump. Like all new parents, I had practically memorized the developmental checklists, and I knew that George should be doing far more at this age.

The doctor asked a few questions, and then agreed that George did indeed seem to be delayed in his speech.

“But,” said the doctor, “The range of normal development is so broad, particularly where boys are concerned. I will give you some speech exercises to do with him at home, and we will see where we are in a year’s time.”

Every instinct I had was telling me that the doctor was wrong, that waiting was not the thing to do. I knew, had known on some level since George was an infant, that there was something wrong.

Instead of trusting my instincts, I listened to the doctor. I did the speech exercises with George, hoped against hope that he would simply open his mouth and talk one day, and then felt extremely guilty when he didn’t improve. Had I not done the speech exercises right? If I had spent more time on it would I have seen results?

At George’s three-year check-up I finally got a referral for a developmental assessment. When the autism diagnosis came in, all I could think of was how the doctor had told us to wait, and worse, how I had listened to a man I already had reservations about.

I thought about the year that George had lost because of this. The year of speech therapy and other autism-related interventions.

The guilt just about killed me.

And I swore that I would never, ever go against my “mother’s intuition” again.

(Photo credit: http://www.flickr.com/photos/truthout/3901813960/. This picture has a creative commons attribution license.)

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Autism Diagnosis: Changing The Landscape

For the benefit of people who are not involved with autism, I will start today’s post with a brief primer on what an autism diagnosis actually means. People who are affected by autism and already know this stuff, bear with me.

Most medical conditions are stated in absolute terms, based on whether they are present or not. Think of pneumonia, Downs Syndrome, or meningitis, to name just a few. The severity of symptoms may vary from person to person, but that does not change the diagnosis.

Autism is a spectrum disorder, and where the individual falls on the spectrum can determine his or her diagnosis. One of the more common autism rating scales is called CARS, or Childhood Autism Rating Scale. For diagnostic purposes, anyone who scores over 15 on CARS is regarded to have an autism disorder. The lower numbers – from 15 to about 25 -  will result in a more specific diagnosis of Aspergers – what some call “high functioning autism” (the use of this term is highly contentious). At the other end of the scale, from about 40 to the upper limit of 65, there are people who receive a diagnosis of autism. And in the middle are the people who are diagnosed with something called PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).

Although people in all three groups are deemed to have ASD (Autism Spectrum Disorder), the specific diagnosis – and therefore the services they receive – will depend on where they fall on the spectrum. It is worth noting that a child may, over the course of his or her life, be diagnosed with all of three things at one point or another. My own son, for instance, was initially diagnosed with autism. His current clinical diagnosis is PDD-NOS.

Primer over. Now I will get to the point of today’s post.

Now, the diagnostic criteria for autism disorders could be changing, and these changes could have some far-reaching effects on the services that are received by individuals who are on the spectrum. Whether the changes would be good or bad is a matter up for debate.

According to the proposed criteria laid out in DSM-V (Diagnostic & Statistical Manual of mental disorders), there will no longer be individual diagnoses of Aspergers, PDD-NOS and autism. Instead, everyone on the spectrum will get a clinical diagnosis of ASD.

This can be good. In the current diagnostic world of DSM-IV, many people on the spectrum do not get the services they need because they are deemed to be “high-functioning”. With a common diagnosis for everyone, the world of services could be opened up to a host of people who have previously not benefited from it.

But.

Let’s take a look at how the actual diagnostic criteria themselves may be changing.

In DSM-IV – the world as we know it today – a total of twelve symptoms are divided into three groups:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behaviour, interests and activities.

The individual has to display at least six symptoms, with at least two from the first group, and one each from the second and third groups. If this condition is met, along with a couple of other factors, you have your diagnosis – whether it’s Aspergers, PDD-NOS or autism.

The proposed DSM-V has the following stipulations, all of which must be met:

  1. Persistent deficits in social communication and social interaction across contexts. Individuals must display all of three symptoms that are worded in very specific terms.
  2. Restricted, repetitive patterns of behaviour, interests or activities. Individuals must display two of four symptoms that again, are very specifically worded.
  3. Symptoms must be present in early childhood.
  4. Symptoms together limit and impair everyday functioning.

The groupings of symptoms, in conjunction with the way in which they are worded, means that it will be more difficult to get an ASD diagnosis, particularly for individuals on the “Aspergers” end of the spectrum. There is a segment of the ASD population who are regarded as “high-functioning” relative to people more severely affected by autism. These people may not meet all of the criteria laid out in DSM-V.

What this means is that although the actual incidence of autism will continue to climb, we may see a decline in actual diagnoses. The general public will be misled into believing that the autism epidemic is being brought under control.

And a host of people who need services could be denied them, simply because they don’t meet the right combination of conditions listed in a manual.

It is important to note that the DSM-V is, at this stage, a draft. It will in all likelihood pass through a host of revisions based on feedback and testing. The DSM-V that is ultimately released could look very different to what is discussed here.

It will be interesting to see if, and how, the autism diagnostic landscape will change.