Autism Headlines Cure The Truth

Doctors make advances against autism


Yippee! According to this headline in the Daily News out of New York, our troubles are over!

Except that the headline is crap. The article goes on to talk about early diagnosis and early intervention - same ole same old. There is absolutely nothing about any so-called "advances."

Parents of children with autism find these types of headlines frustrating. This headline gives the impression that medical science is well on its way to solving the autism "puzzle." From the extensive reading I've done, and continue to do daily, I can tell you that's far from the truth. In fact, I believe we are at least one generation, probably more, from definitely figuring out what causes autism. I'd truly love to be wrong, but, unfortunately, I don't think I am. In the meantime, a headline like this allows the general public to put autism to the back of their minds, safe in the knowledge that "somethings being done" to help those affected.

This generation is going to grow up and the puzzle for parents and society to solve is how to take care of all those adults who can't take care of themselves.


C'mon, doctors, please make some REAL advances! Journalists, stop selling newspapers with headlines full of crap!

The Five Stages of the Autism Parent

If you weren't raised by wolves, you've probably heard of Elizabeth Kubler-Ross's ground-breaking model of the five stages of grief. Here's the list:

1) Denial
2) Anger
3) Bargaining
4) Depression
5) Acceptance

People associate the theory with death, and Kubler-Ross did include death, but she also applied it to any catastrophic personal event in a person's life, such as divorce and job loss.

As a parent, receiving a diagnosis of autism for your child can certainly be considered "catastrophic." Don't misunderstand me, because there will be someone out there who does! I'm not saying the child is a catastrophe! I'm saying getting the diagnosis is! It changes everything.

Most people understand the stages as a progression, that they fall in the order listed, but Kubler-Ross noted that this is not necessarily true. Many people skip one or another, and many people get stuck in one of them. I talk to a lot of parents. I see many of them stuck in one. I, myself, was stuck in Depression for quite some time. I now believe that, as parents, the best way to help our children is to get ourselves to the state or stage of Acceptance.

Denial seems to affect dads the most, more so than moms. They often get stuck in "there is absolutely nothing wrong with my kid" or they consume themselves with work to avoid having to face the day-to-day reality of having a child who can't be "fixed." I'm not saying ALL dads are like this, but anyone who's been paying attention to the world of autism can see that it's the moms who most often jump past Denial and into Anger.

I see a LOT of people stuck in Anger. They're certainly all over the Internet. SOMEBODY -- the Government, the CDC, the doctors, the "Big Pharma" companies -- did this to their child, and "They" are gonna pay! Personally, I think this is the most dangerous stage for a parent to be stuck in. It helps to be in it for a short time, because anger can be very motivating and can give us strength, and we parents certainly need to be motivated and strong to get our children what they need. However, at some point, parents need to get over it if they're ever really going to help their child move on with life and living with autism.

Bargaining - I'm not sure I see this that often, but then again, it may be very personal and internal. Kubler-Ross identified people bargaining with God, and that can be a very private thing. Then again, is it a form of bargaining when people try any and all desperate and potentially harmful measures to cure their child? Many people seem to me like they'll certainly trade a "whole" child for the one they were given, no matter what they like to call it (again, Denial).

Depression, as I mentioned, is one I'm intimately familiar with. I believe, and I've seen studies confirming this, that most mothers of children with autism suffer depression to some degree and for varying amounts of time. It is an incredibly exhausting, overwhelming, and guilt-ridden state of being to mother a child with autism, especially when Dad is stuck in denial and not helping. If you think you might be stuck in Depression, please get yourself help! Please ask for help from family and friends!

Kubler-Ross considered Acceptance the healthiest stage of grief. Whatever the catastrophe, it's best to move on and live a life that acknowledges the death, the break-up, the diagnosis, and cope with what comes after. Autism, right now in 2008, is at a point that makes this difficult. Because there are theories about what causes it flying around out there with no solid answers, it's hard to just accept that this is how this child's life is going to be and to plan the future accordingly. It's hard to accept that we can strive for a cure, we can do all the therapies and the treatments, while at the same time, we have to accept that things might not change in this generation. Discoveries and cures can and do take decades, especially with something as complicated as this. If it was as simple as "vaccines cause this, " we'd be over and done with it already.

I've heard that it's very different for parents whose children are born with Down's Syndrome. Because medical science has pinpointed a definite cause, because the parents know for certain that nothing they did caused it, because they know for certain that there is no curing it, those parents can more easily get to Acceptance. They know they need to work on a plan for the future. They know they need to "move on" to help their child for their entire life.

I believe that for our children to have a happy and positive future, we parents of children with autism need to take a lesson from those parents and get ourselves to Acceptance.

Of course, there will be many parents who angrily retort that I'm telling them to "give up." That's not it at all. Don't give up! But don't consume yourself to the point that you and your child are not enjoying life now, and please, please, please, don't get stuck to the point that you aren't thinking about the future because you're convinced your child will be cured soon and the future will then be taken care of. As the saying goes, "hope for the best but plan for the worst." That's Acceptance.

"Curing" Autism

There is so much fervent talk about curing autism. It seems that if, as a parent, you don't put every ounce of your energy into "curing" or "recovering" your child, you have failed.

I believe there currently is no "recovery" right now for most of our children, and that there won't be a cure in this generation's lifetime. To some, that belief means I'm not "doing everyting I can." I'm not "fighting the war" on autism, I'm "giving up hope." But as my dear late father would say, "I'm not a pessimist, I'm a realist." Besides that, who and what are we fighting this "war" against? It's beginning to feel to me a lot like a war against my son and who and how he is, not a war against something that's bringing him harm.

Our children are not deaf - they hear us talk about them, and we talk constantly! I believe most of them understand what's being said and after a while, it must sound to them like they are bad, they need fixing. The Internet is full of adults who angrily call their parents "curebies" and hate them for what they've done in the interest of curing them.

The problem I have with people intent on cures and "doing everything they can for their child" is that they are NOT "doing everything they can for their child." "Doing everything that they can for their child" would involve spending half of that fervent energy on making that child's life, as it is with autism, happy, comfortable, and containing a future -- just in case autism isn't cured in their lifetime. Focusing on a cure alone suggests that there is no future without a cure, there is no happiness without a cure, the person with autism is not good enough without a cure.

Because I have decided to give up on the burden of maintaining a GFCF diet that hasn't netted any measurable results, because I haven't tried chelation or hyberbaric, it's suggested by some that I'm "not doing everything for my child." On the contrary, allowing my child to BE and be happy and accepted and not turn him into my own personal science experiment IS doing everything I can. Don't misunderstand me: I do think we need a cure. This disorder is VERY tough on family and society. But it's not cancer, which is a disease that can kill a person, and an unwelcome assault on the body. Autism is, to those personally affected, a way of being, and who wants to be told they must essentially change to be accepted? We must put as much energy into planning and preparing for a future for our children AS THEY ARE as we do to figuring out why this "epidemic" is happening.

How about for one day YOU be a "hero?"

There's a new book out titled "Autism Heroes" that exalts the heroics of parents of children with autism. "Heroics" being pretty much defined as doing everything they can for their kid. As the mother of a child with autism I get a lot of "I could NEVER do what you do, Julie!" from people. I don't get it. If their child had autism, they'd stuff him in the garbage and walk away? They'd return him to the hospital as defective? They'd chain him in the basement and pretend he doesn't exist? Being a parent to a child who happens to have this disorder makes me and other parents in this situation heroic?

Hell, I could never do what I do, either. But I have to. My son is mine. I love him. I want the best I can do for him, like anyone else. There aren't a lot of other options.

I'm often exhausted and depressed. I'm not sure I CAN "do it" one more day. Friends and family could, for one day, stop exclaiming their praises over my heroics (or stop telling me what I should be doing) and give me a hand. Yes, people, you COULD do what I do!

Help someone out who has a situation that they didn't bargain for. Give them a break for one day -- or overnight.

Now THAT would be heroic.

Ranson Notes Recanted

The "Ransom Notes" have been removed, thank goodness. The psychiatric clinic in New York that was advertising for awareness got enough emails and phone calls from pissed-off parents, like myself, to re-think their message to the public. (See my previous blog)

Their main reasoning for pulling the inflammatory ads seems to be that their staff is spending too much time fielding the calls and emails. It was merely their intention to draw attention to the serious issue of untreated childhood psychological problems, but they unintentionally offended parents of children with these issues. They really didn't see it coming, which is an indication of how out-of-touch most of the medical community is with the reality of day-to-day life for families dealing with autism spectrum disorders and other psychological disorders.
A psychiatric clinic cannot -- at this time, anyway -- 'rescue' my son. They have medications to dispense. My son's psychiatrist, while a great guy and a very good doctor, relies heavily on MY input, rather than the other way around. He doesn't have many answers for us, other than trial-and-error on treating my son's most disruptive symptoms with medications. That's all modern psychiatry can offer families right now. Why offend us with bizarre "ransom notes" in the name of helping us?

I really hope they mean it what they say in the recant:

"Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority."

Again, all awareness is not good

We have your son. We will make sure he will no longer
be able to care for himself or interact socially as long as he lives.
— Autism

This is one of the six “ransom notes” that make up a public service campaign by the New York University Child Study Center to raise awareness of what Dr. Harold S. Koplewicz, the center’s founder and director, called “the silent public health epidemic of children’s mental illness.” The shocking billboards and posters are plastered all over New York.

The idea is to wake up parents, to shake them out of their supposed denial, and get them to bring their children in for treatment. Who do they think is in this denial? I'm well aware, as are the vast majority of parents who have children with autism, that my child has the disorder. We don't need a billboard to tell us! In fact, my experience, and the experience of almost every other parent I've talked to (and I've talked to many) is that it's been THE PARENTS trying to convince the DOCTORS that something 'isn't right' with our babies, not the other way around.

What I'd like to know is this: is New York University going to "rescue" my son from his so-called "kidnapper?" There is no cure for autism. As a parent, I have tried everything to help my child, and a rude smack across the head, such as this campaign is, doesn't help me or my child.

What's the point, then, other than shock value, for this campaign? Why load another pile of despair and hopelessness on parents who already fight every single day to stay positive and optimistic? If you want to work on awareness, work on making society aware. I'm already well-aware, believe me.