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Autism Diaries: On This Day…

February 2, 2016 By
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.

Filed Under: Assessment, autism, Autism Diagnosis, Education, School, Special Education Tagged With: , , , , , , , , , , , , , , ,
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Diagnosis Day: 8 Things I Wish Someone Had Told Me

April 12, 2013 By

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Do you ever look back on a particular day in your life and wish things had gone differently? If only you’d said this thing, or if only you’d done that thing. We all know, of course, that those “if only” scenarios don’t do us one whit of good in terms of the outcome, but that doesn’t mean we’re not allowed to think of them. Sometimes we can use those lessons in the future, and sometimes we can help other people going through similar things.

One of the most pivotal days in the life of an autism parent is the day of their child’s diagnosis. When I look back on that day, I remember shock, tears, and a sense that a giant constrictor had wrapped itself around me and was squeezing me so tightly around the chest that I could barely breathe.

Realistically, there’s no way to completely cushion a blow like this. But maybe – just maybe – there are some things that would make it easier to bear. Here are the things I wish I had known when I got the diagnosis.

1. The doctor does not have a crystal ball. Any dire predictions that he makes for your child’s future are not set in concrete.

2. If you Google too much too soon, you can drown under the weight of the information overload.

3. Your child is first and foremost a child. Don’t let your child become the diagnosis, the whole diagnosis and nothing but the diagnosis.

4. You may feel as if your reality has shattered, but all that’s happened is that your reality has changed. You have to give yourself the space and time to get used to your new view.

5. Now more than ever, you need to nurture your relationship with your partner.

6. Apply for all the funding and services you can, even if you think odds are stacked against you. There’s always the chance that something will stick.

7. Don’t be afraid to cry. Even if it’s in front of the kids. It’s OK for them to know that you’re human.

8. Know that you can do the whole special needs parenting thing. You may not feel that way in the beginning, but you will. You don’t have to know all the answers – because let’s face it, none of us ever does – just know that you will be the parent your child needs you to be.

 

Filed Under: Autism Diagnosis, Health Activist Writers Month Challenge Tagged With: , , , , , , ,
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5 Websites That Every Autism Parent Should Bookmark

April 4, 2013 By

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If you are the parent of a child who has recently been diagnosed with autism, you’re probably floundering a little bit. You are going through a major reality shift, and you are wondering, What next? My biggest piece of advice for parents in this situation is to avoid the temptation to Google “autism”. That is a sure recipe for information overload, which can compound any feelings of helplessness and anxiety that you may already be experiencing.

Give yourself at least a couple of weeks of breathing space (or longer – my doctor imposed a Google ban of 30 days, which I am absolutely convinced helped me enormously). When it is time for you to start looking up stuff, start with the following information. It will not only help you now, it will stand you in good stead throughout your autism parenting journey.

1. http://www.wrightslaw.com/  Wright’s Law is aimed at parents in the United States who have special needs kids in the special education system. Although a lot of the information is specific to American laws, a great deal of it applies elsewhere. This site will give you some very good information and resources about your child’s rights, and your rights as a parent.

2. http://www.tdsb.on.ca/ If your child is in the Toronto District School Board, this is the site you want. If not, look up the website of whatever school board your child is being, or will be educated in. Once you have found the site, navigate to the Contacts page and bookmark that. It is likely to contain the phone number of at least one individual whose job it is to deal with special education matters.

3.  http://www.hc-sc.gc.ca/hc-ps/dc-ma/autism-eng.php This is the Health Canada resource site for autism. Most governments have sites like this, and they include fact sheets, and information that is specific to where you live, like funding and services that are available.

4.  http://www.autism.net/resources/about-autism.html The Geneva Centre for Autism provides some good information about what autism is and what it means to families who are affected. You can use this not only for yourself, but to pass on to friends and family members who you feel could benefit from the information.

5.  http://www.edu.gov.on.ca/eng/general/elemsec/speced/speced.html If you’re in Ontario, you need this site. If you’re elsewhere, look up the site that contains information about special education laws and processes in your jurisdiction. This will tell you what you and your child are entitled to and how to navigate the maze of educators and policy-makers, what forms to fill in, what you can request, and much more.

As a bonus, here are a few posts I have written in the past that may be of help to families affected by autism.

1.  Tips for parents whose kids have just been diagnosed. http://www.runningforautism.com/2012/11/17/new-autism-diagnosis-5-tips-for-parents/

2. Some possible early signs of autism (emphasis on “possible” – typical kids may experience some of these as well). http://www.runningforautism.com/2012/11/08/five-early-signs-of-autism-my-familys-experience/

3. A fantastic guest post by autism parent and educator Jennifer Krumins, on how to approach life as an autism parent. http://www.runningforautism.com/2012/06/04/guest-post-its-a-marathon-not-a-race/

4. Tips for parents who feel a little lost when it’s time to draft an Individual Education Plan. http://www.runningforautism.com/2011/10/25/10-iep-survival-tips-for-parents-of-children-with-autism-2/

5. How to keep your neurotypical children safe and reassured when their sibling is having an autism meltdown. http://www.runningforautism.com/2011/09/10/autism-meltdowns-six-strategies-for-helping-siblings/

 (Photo credit: Sonia Belviso. This picture has a creative commons attribution license.)
Filed Under: autism, Autism Diagnosis, Health Activist Writers Month Challenge, parenting, Resources Tagged With: , , , , , ,
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New Autism Diagnosis? 5 Tips for Parents

November 17, 2012 By

It’s a scene that many parents are all too familiar with. You’re sitting in a doctor’s office and you’ve just received news that your child has autism. You did know, of course, that something was wrong – after all, that’s why you had your child assessed – but you’ve been in a weird twilight zone of denial, in which you have managed to convince yourself that this thing that’s wrong with your child is just temporary, that it’s nothing a bit of speech therapy or O.T. won’t cure. And now, here’s this doctor telling you that your child will be living with autism for the rest of his or her life.

You can barely listen as the doctor goes on about how your child’s trajectory through life will be atypical, delayed, and fraught with challenges. You are too stunned to pay attention to anything but the hopes and dreams you had for your family crashing all around you.

How do you cope? How do parents find out that their child has a lifelong developmental disability – one that will in all likelihood necessitate some level of permanent care – and then go on to live some kind of a normal life?

Tip #1 – Remember that the doctor does not have a crystal ball

The doctor can’t just say to you, “Your kid has autism. See ya!” He has to talk to you about therapies, strategies, next steps – and that inevitably involves talk about how he sees your child’s future. But the thing is, many doctors tend to be a bit pessimistic, and they will give you the worst case scenario.

When we were getting my own child’s diagnosis five years ago, the doctor could not have painted a bleaker picture of the future if he had tried. We heard all about the stuff my son would never achieve, experiences he would never have, things he would never be able to do, the intensive level of care he would need for the rest of his life.

The doctor was not trying to be mean. He wasn’t trying to be negative. He was just presenting what he saw to be the reality. He had no way of knowing that in the first year of IBI therapy, this kid would make 23 months worth of gains. He did not know about the mathematical aptitude or unique problem-solving skills, and he could not predict that given the right educational environment, my child would be able to soar.

Anything the doctor tells you about your child’s future is just a guess – an educated guess, but a guess nonetheless. Don’t let bleak predictions make you give up hope.  Your child needs for you to believe in his or her potential, and to be frank, if you have a bit of faith, it will do your own spirit the world of good.

Tip #2 – Watch out for information overload

Human beings are curious by nature, especially when it comes to the wellbeing of their offspring. I would venture to say that most parents, on receiving their child’s autism diagnosis, go home and make a beeline for the computer so they can Google “autism”. I know I did.

The Internet can be pure crap, though. A Google search for “autism” yields over 76 million results. If we very generously assume that 10% of the information on the Internet is completely solid and scientifically proven and not the subject of any debate or controversy, that leaves you with seven million pages of “good” information.

It is a daunting task, trying to filter out the seven million pieces of “good” information from all the junk. It can make the most hardy of souls feel like they’re drowning.

Information is all well and good, but it has to be consumed in manageable doses, especially in the beginning. The diagnosing doctor will give you fact sheets and other information. That is all you need in those initial days while you are trying to adjust to this new reality.

Tip #3 – Get your name onto waiting lists and find out about funding

Your doctor will probably give you the names and phone numbers of local services, like speech therapy, O.T. , and autism intervention services. If he doesn’t, call him back and ask. Then call and enroll for the services. Some areas will have one central place that organizes all of the services; in other places it is more fragmented. No matter which way it works, it is better to start services as early as you can, and unless you live in some kind of Utopia, the places you call are bound to have waiting lists.

At the same time, find out about funding. If you live in a country with socialized health care, as I do, then many of the services for your child could be covered by the government. You may be entitled to disability tax credits and funding for respite care or specialized equipment. Your local autism foundation should have information about the available funding, and they may even have experts who will help you fill in the forms.

Tip #4 – Don’t let autism define your child

This may seem self-evident, but in the wake of receiving the blow of an autism diagnosis, it is hard to think of anything else. Parents of newly diagnosed kids often go through a kind of grieving process as they come to terms with the loss of what they thought their “reality” was. You may find your heart breaking every time you look at your child.

But remember that the diagnosis itself has not changed anything. Your child is still the same person he or she was yesterday, or last week, or last month. Your kid may have autism, but he or she is first and foremost a little kid, with those little quirks and personality traits that guarantee uniqueness.

Autism will always be a part of who your child is, but it is far from being the full picture.

Tip #5 – Take care of yourself and your relationships

When I saw my family doctor shortly after my son’s diagnosis, he gave me a startling statistic: about 80% of couples who are parents of kids with special needs or chronic illnesses split up within two years of diagnosis. It is easy to be on the outside looking in, and say that parents should draw strength from one another, but the truth is that something like this puts a huge strain on many relationships.

The thing is, each parent is thinking about autism, and how they can help their child. This becomes the singular focus consuming both of them, so much so that neither of them has room for anything else. And so they neglect themselves, and they neglect each other. It’s not their fault – they are just putting their child’s needs ahead of their own.

Do we not deserve to be happy, though? Yes, parenting our kids is the most important job we’ll ever have, but we are also individuals in our own right, and if we neglect ourselves and the relationships with the people we care about, we will drown.

So make sure you take time to be with your partner, just because. Spend time with your other children. Nurture your friendships, and most of all, take time out for yourself.

And don’t feel guilty about taking care of yourself. You deserve it.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Autism Diagnosis, Autism Services, Coping Skills, Doctor, Information, parenting, relationships Tagged With: , , , , , , , ,
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Five Early Signs of Autism: My Family’s Experience

November 8, 2012 By

My boy at the Autism Centre family day

When I tell people that my son has autism, the first question many of them ask is, “How did you know there was something wrong? What made you get him assessed?” Many people asking this question are having concerns about their own children, weighing up the idea of taking them to a pediatrician.

It would be so easy to point worried parents to websites listing early childhood development checklists and signs of autism, but that would only help a small number of people. The trouble with autism is that it is so individualised. It manifests in so many different ways. You get the kids who can’t string two words together but can rebuild a computer in two minutes flat. And you get the kids who are fully verbal but never learn to look both ways before crossing the street.

Here, I share my experiences with my son. Some parents will read these and nod along knowingly, identifying with every point. Others will wear a perplexed expression and say, “My child doesn’t do that.”

So, how did I know something was wrong?

1. Lack of speech or any other meaningful communication. By the time he was two, George was not talking. He had about thirty words in his vocabulary, but he was using fewer than ten of them in the right context. They were used as single words only, always for the purposes of requesting. Juice. Milk. Chee’s (Cheerios). He also did not have any kind of repertoire of meaningful gestures. He couldn’t point, and if he wanted something he did not know the word for, he would take my hand and move it in direction of the object he wanted.

2. No desire to play with other kids. When other kids his age were starting to play collaboratively with each other, George was still in parallel play mode. He did not object to the presence of other kids as long as he had the space to sit on his own and do his own thing. He did not see other people as potential playmates, but as functional beings: if he needed help to manipulate an object or separate stubborn Lego blocks, he would seek out an adult and shove the object into their hands. That was the extent of his interaction.

3. Not using toys for their intended purpose. Unlike some parents who say that their kids “became” autistic at a certain age, or after a certain event, I had a feeling fairly early on that there was something not quite right with George. One day, when he was at the age when babies are just learning to sit unsupported, I put him in the middle of the floor and propped him up with a nursing pillow. I surrounded him with all kinds of toys, just to see if he would respond to anything. There were stuffed animals, Lego’s of various sizes, fabric books, and a variety of planes, trains and automobiles. There was all kinds of stuff. He didn’t care for any of it. His attention wasn’t caught by the brightly coloured balls, and he didn’t make any attempt to grab at or swat any of the dangly things I tried to entice him with. He pushed a big red button on a train, and then grabbed a piece of string that was caught on my shirt and spent the next half-hour staring at it from different angles.

4. Prone to sensory overload. As a toddler, George hated going to the store. He would tolerate the grocery store for short amounts of time, but by the time I was at the checkout, he was usually having a meltdown of epic proportions. In those days before the autism diagnosis entered my orbit, I couldn’t understand what he was making such a fuss about. The only way for me to stop those meltdowns was by taking him out of the store. Looking back, I now realize that he was simply overwhelmed by everything that goes on in a store: fluorescent lights, lots of people, lots of displays, lots of sounds. Wal-Mart in particular set him off. Something about the checkout area sent him into a state of absolute panic.

5. Instinct. Ahhhh, there’s nothing quite like a mother’s gut feel. I have no idea if there is any science behind it, but mothers have this uncanny ability to just know there is something wrong with their child even though all looks fine and dandy to the outside world. This is why I always tell mothers that if they have a feeling something might be amiss with their child’s developmental progress, they should park themselves in their doctor’s office and insist on a referral for an assessment. There are doctors who will tell you to wait, that the range of development is broad, that boys reach milestones later than girls. Don’t listen to that guff. Don’t take no for answer. If you have to tell your doctor that you will sit in his office gathering dust until he gives you a referral, so be it. Listen to your instinct and don’t let anyone talk you into acting against it. I made that mistake and to this day, I bitterly regret the year of early intervention that my son missed as a result.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Autism Diagnosis, Developmental Delay, Early signs Tagged With: , , , , , , , , ,
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Challenges of Special Needs Parenting

August 23, 2012 By

This week, I am participating in the WEGO Health “Advocating for Another” carnival. Each day, there is a prompt that I answer in the form of a blog post. Although only George has the autism diagnosis, we also recognize the challenges faced by his little brother. All of my posts here this week are dedicated to him.

Today’s prompt: Challenge accepted! Parenting isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a parent.

Me and my boys, September 2010

“That must be so hard.”

That is a common response when people find out that my son has autism. And they are right. It is hard, but not necessarily in the ways one might expect. Because as parents, we all do what we have to do. We all want the same things for our children, whether they have special needs or not. We try to keep our children safe, and for me, that sometimes means physically restraining my son to stop him from banging his head on the hardwood floor. We try to make sure they are reaching whatever potential they are capable of, and for our family, that entails intensive behavioural intervention, speech therapy, individual education plans, and navigating the special education system.

These things are challenging, and at times, heartbreaking. But I am so busy just doing what needs to be done that I don’t really give a lot of thought to the hardship factor of it all. At the end of the day, the reward is far greater than the challenge. We get the smiles, the hugs, the occasional leaps of progress that make it all worthwhile.

As full of bravado as I might sound, though, I am only human, and there are things about this whole special needs parenting gig that I wish I could be better at.

Managing the sibling connection

I often worry that James got a rough deal, being the brother of a kid with autism. So many things happen that, if I were in James’ shoes, I would be downright mad about. James, for instance, gets more timeouts than George, not only because he is more aware of what his behaviour should be like, but because George doesn’t really get discipline. I can explain to James until I’m blue in the face that the best way to punish George for bad behaviour is to simply ignore it, but how can a six-year-old be expected to understand that?

Then there are the times when James has to patiently stand by waiting for attention while I am dealing with one of George’s meltdowns. Those meltdowns, which involve George screaming in frustration and trying to bang his head on things, must be so frightening for James to see and hear. And yet this little kid waits patiently for whatever he needs, be it a cup of milk, or the answer to a question, or simply a comforting hug.

I try to make it up to James in other ways. I try to talk to him about George’s autism and what it means. There is no doubt in my mind that James adores his brother, and for the most part he seems to be happy. But I cannot help wondering just how well I am doing this parenting thing. How good a job am I doing of balancing the oft-conflicting needs of my two boys?

Managing the marital connection

When George was first diagnosed with autism just over five years ago, my doctor gave me a startling statistic. About 80% of couples who have children with special needs or chronic illnesses break up. I think that is unspeakably sad. I mean, when someone’s life is turned upside down by the reality of there being something wrong with their child, a strong spousal partnership could bring such comfort and take away that feeling of being all alone. But instead of coming closer together, many couples are ripped apart by their grief.

My husband and I both went through a process of grieving when we first discovered that George had autism. We had put together a beautiful picture of what our family life was going to be like, and in one swoop that picture was destroyed. At the time, we had no way of knowing that we would ultimately build a new picture – one very different to the original, but no less beautiful. All we knew was that we were crushed under the weight of what was going on.

Things got rough for us, but we survived. Together. We have our moments where things aren’t so great, but in the end we are partners, and we are in this together.

It can be so hard, though, to find the time and energy for one another. We are both working so hard to create the best possible lives for our boys, that sometimes we drift a little. At those times, we have to make the effort to drift towards each other.

Managing my own needs

I don’t claim to be anything special. I’m just a regular mom who happens to have a child with autism. I have a full-time job a one-hour commute away from home, I help out with my husband’s business, and I raise my kids. I cook, I clean, and I do laundry. I make sure the bills get paid and I try to get to bed at a reasonable hour each night.

I stay sane by running, and by writing. Occasionally, I even write stuff that makes sense. I love to write because it gives me a voice. I love to run because it provides a physical release from the stress, and because it gives me time to myself, to clear my head.

Here’s the thing, though: I am only one person, and no matter how well I manage my time, there are only 24 hours in one day. And when I start running out of time to do everything that needs to be done, the first thing to go is the stuff that I do for myself. Gaps start to appear in my blog. I submit archive pieces to the ezine I write for. I curtail training runs, or even – Lord forbid – cut them out altogether.

It’s as if my lowest priority in my life is myself. And I wonder if that is OK. Could those bills not be paid tomorrow instead of today? Will the world end if the laundry doesn’t get done right away? Does it matter that, once in a while, I’m grabbing something convenient from the freezer just so I can spend time taking care of myself?

I don’t know the answers. But I do think I do a reasonable job as a parent, and I am having the time of my life seeing my kids grow up.

(Photo credit: Holly Bannerman)

Filed Under: autism, Autism Diagnosis, Brothers, Challenges, family, Marriage, Self-Care, WEGO Health Tagged With: , , , , , , , , ,
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Mother Knows Best

April 17, 2012 By

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.)

Filed Under: autism, Autism Diagnosis, Autism Services, Doctor, Health Activist Writers Month Challenge, IBI, WEGO Health Tagged With: , , , , , , , ,
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Autism Diagnosis: Changing The Landscape

January 13, 2012 By

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.

Filed Under: Aspergers Syndrome, autism, Autism Diagnosis, Autism Services, DSM-IV, DSM-V, PDD-NOS Tagged With: , , , , , , ,
post

Autism Diagnosis: Blessing, Curse, or Both?

January 12, 2012 By

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?

Filed Under: autism, Autism Diagnosis, Autism Friendships, Autism Services, Developmental Delay, Doctor, Learning Disability, Special Needs, Support Groups Tagged With: , , , , , ,