Wednesday, July 23, 2008

What Matters

If you've been around the Cookie Jar for any length of time, you'd probably notice that I don't often comment on the news. To be honest, there's lots of things I don't feel I know enough about to give a fair opinion on, and as a writer I've always tried to stick to the adage "write what you know."

Then Michael Savage opened his big mouth and made comments about autism.

“Now the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.”

When taken to task on his comments, his reply was,

“My comments about autism were meant to boldly awaken parents and children to the medical community’s attempt to label too many children or adults as ‘autistic,’ ”

To the NY Times, he stood by his remarks too;

“My main point remains true. It is an over diagnosed medical condition. In my readings, there is no definitive medical diagnosis for autism.”

There are no definitive medical diagnoses for many ailments, but that doesn't mean that they don't exist.

As a special ed paraprofessional for the past 15 years, I have seen what Hubs and I call "Flavor of the Month" diagnoses in our professions. It seems as though certain labels become 'trendy', just not within the professional circles, but within the media. Books are published, workshops are suddenly hot venues, and the label becomes the buzzword. Teachers, social workers, special ed paraprofessionals, and concerned parents flock to workshops and learn about it. Only here's the danger: what they learn only scratches the surface. You can't learn about ADHD, Austism, or any other disorder in isolation. You have to know that many, many, other disorders, including abuse and neglect, can cause the exact same symptoms of a child with ADHD. Autism, dyspraxia, Sensory Integration Disorder, dyslexia, and Giftedness all share similar traits as well. Some can co-exist and then you have layers that you have deal with. It's a delicate and highly complicated balance that also takes into account children's temperament, their home life, past trauma, genetics, etc. It simply can't be diagnosed in 5 minutes with a checklist.

So this trendiness takes off, spreads, and people, armed with that bit of knowledge about Conner's checklists, fidgeting, inattention and disruption start seeing every kid that sort of fits that slot as having the disorder. Suddenly they are referring every child that they think may have it for testing, and in the process, freak out the parents-who typically don't have experience with these labels.

How do you think every kid my son's age knows to ask "Do you have ADHD?" when they see an active kid? Why would they even think to ask a three year old? Doesn't that also make it harder for kids who actually HAVE ADHD?

How could anyone, short of a qualified medical doctor after a real period of time spent with the child, extensive testing, and talking to the parents, really know?

When Jake was small I first encountered the ADHD assumption in a grocery store with a complete stranger. I had no idea that it wasn't going to stop there. In the years to come, there were teachers, parents, kids, and random strangers who were convinced that Jake had ADHD and therefore should be medicated. Fortunately, having worked with ADHD children, Hubs and I knew better. Every time a Connor's checklist was thrust at us, we threw it back. We refused medication. We challenged the professionals who insisted, and then demanded, because there is one key thing to the diagnosis of ADHD that they were completely missing altogether.

In order for a kid to be diagnosed with ADHD, the behaviors (inattentiveness, etc) have to manifest in more then one situation. Jake's only manifested at school or in really busy/crowded places.

It didn't fit, and we weren't buying it.

The pressure to succumb to the label, and therefore drug Jake, intensified as he got older. He began acting out more. The professionals, obviously put off that we challenged them, upped the ante. We were "just ignorant parents" anyway, who obviously "were in denial" and "didn't know what we were talking about." The new label?

Severe behavior disorder.

Just think about it. This child, a gentle soul who has sensory sensitivities, anxiety, a motor coordination disorder and learning disabilities, and who is being told that he needs to be in a room with kids who throw desks and set fires because he has a "severe behavior problem." In reality, he became so emotionally traumatized he began talking about killing himself.

It almost destroyed Jake. It almost destroyed all of us. Again we fought back, not accepting that label either. They were WRONG. A new label, this time autism, was thrown out by a superintendent who had never laid eyes on Jake even once.

We left that district and came to another, ready to do battle if need be. However, this is where we met our angel. Much to our surprise, one single teacher accepted that we knew what we were talking about and quietly, gently, over time, gained our trust. I swear that poor woman was put through more hell from our suspicious and prickly exterior then I'd like to admit. After some testing that revealed that something wasn't quite right, we were advised to look into things further at a specialist. Given our sensitivity to label tossing it was never said, but being a seasoned pro by now I knew exactly where this was going.

The new label was Autism. Based mostly on Jake's difficulty with reading non-verbal cues, some social difficulties, fine motor problems, and his sensory sensitivities.

At first we balked at the idea. We weren't going to put Jake through testing to satisfy a system to gain a label that wasn't correct. I've worked with autistic kids and I was positive, right down to the core of my being, that the label was wrong. I must clarify here that this time was different-nobody demanded that Jake actually had this disorder. This time, the school actually had responded appropriately with "The tests show this. It concerns us. We think you need to have it checked out." With our last experience still fresh in our minds we were suspicious but in the end, we went ahead. Our goal simply was to have that piece of paper that we could point overzealous schools to and say,

"HERE. This is his diagnosis. Now stop trying to diagnose him yourself."

Why do I say that? People have actually done that. Once I went to pick up Jake and someone I had never seen in my life approached me. He had spent a few hours with Jake that day-had never seen him before that, never read his file, didn't know our history, had no clue of the diagnoses that Jake did have. This person diagnosed Jake on the spot with a disorder that I had never heard of and told me to get him tested.

Diagnosing when you do not have the qualifications to do so is so wrong on so many levels. Parents are desperate for help-for an answer, and for a professional to just throw that label out there is unprofessional and immoral. It destroys families. This isn't about who has it right, it's about a child. A child that deserves to have a correct diagnosis, because an incorrect label can do more damage then no label at all. Sure, tell the parents that "this is what I observe and I think you really need to have this looked at further", but do they realize what it does to people when they say "Your kid has _____"? Do they know the devastation of realizing that something is wrong with your child? How sending them down the wrong path entirely can wipe out YEARS of finding the RIGHT diagnosis, and possibly treatment?

In the end, we had Jake tested for Autism and within five minutes, the doctor came out shaking his head. Jake didn't come anywhere even remotely close to the spectrum. The trouble with social skills was likely from the trauma he had suffered. The not picking up cues was probably inattention, and sensory sensitivities are part of dyspraxia, which is what he was diagnosed with.

All those years of pure, raw, living hell, and in the end Jake actually had a motor disorder that schools could have given him therapy for, but were so focused on ADHD that they missed the boat altogether.

We mentioned to the doctor about autism becoming a bit of a buzzword and "Flavor of the Month" diagnosis, and much to my shock, he actually agreed with us. Apparently far more kids were being referred that weren't even close to autistic. Which is good, in some ways-maybe there is more awareness and more kids are being helped early. Or is it? Are they putting families through what we went through? I was completely horrified.

While I completely disagree with Michael Savage's views on autism, I do agree that trendy diagnoses, in general, are dangerous. Even more dangerous are the professionals who give them. However, I believe that Mr. Savage points his finger at the wrong target-not just the medical community, but school systems, need to shoulder some of the blame for this phenomenon. Teachers are not qualified to diagnose children. Period. Even those who are qualified need to be taken to task.

"So you've seen my kid for five minutes and you think he has ADHD? Bullshit. Prove it. Give me a 3 day in house assessment and do an MRI, and maybe then I'll buy it. Don't even think about giving me some stupid checklist and a five minute appointment, then writing up a prescription for drugs, expecting me to dance with relief. Not going to happen."

It really is up to us, as parents, to take those professionals to task. Gone are the days where the teacher or doctor is revered as knowing all-we have to question, and challenge things that we don't think are right. We know our kids best and it's our job to stand and fight for them, even if it means going out on a limb and standing up for what you believe while everyone else is telling you you're crazy. Even amidst the whack jobs on the radio or at the grocery store who assume that your child is undisciplined and that you are a bad parent. The world is full of them, and autism isn't the only target. We live with that reality here at the Cookie Jar every single day.

In the end, does their opinion really matter, anyway? Or is it that soft, pure soul that you brought into this world and swore to protect, even when the situation was hard, nasty, and uncomfortable for you?

Let me tell you this from a Mom that has been there; when your happy, healthy child takes your hand and thanks you for every time you stood in the face of adversity, every tear you cried, for having faith in them and never allowing them to give up....

That's ALL that really matters.

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