Autism, Asperger's, Neurodiversity, and the skewed perspectives in each of the camps!

I know this is somewhat off topic for the series I have started on Asperger's, but this just needs to be said! Had a friend forward me some articles regarding the back and forth between the autism and neurodiversity camps, and I just could not contain myself any longer! Autism, Asperger's, Neurodiversity and the skewed perspectives in each of the camps is my title that I think says it all! Yep, I know I am going to get some hate mail, but I only ask one thing first, please read the entire blog post before you comment! I think if each side is honest, you will have to admit there is a tremendous amount of truth to these words and at the end of the day, all of this is boiling down to OPINIONS and PERSPECTIVES.

This all started day before yesterday, when a dear friend forwarded me the following articles:

1. The New Wave of Autism Rights Activists -- New York Magazine

2. Controversial New Movement: Autistic and Proud - ABC News

I have long been involved in the autism community, as an individual with an autism spectrum disorder, as the parent of two children who have autism spectrum disorders, and as the Founder/CEO of an autism treatment center that works with and treats thousands of individuals and their families struggling with the same, I was disturbed to say the least.

One of the most bewildering issues I have experienced while in this field is the flat out dissension between the ranks and what seems to be the inability of the ASD community to agree to disagree on some things, yet pull together on the majority of issues we could more than likely agree upon. What I have seen instead is the division of the autism community into camps, and the dangerously polarizing view that in order to walk in a particular camp, you must agree 100% with their views and agendas. THIS IS NUTS! No wonder we're not getting anything done as a community.

Taking this a step further, both sides are right AND both sides are wrong! There is no cut and dry answer here across the board on all issues. Welcome to the spectrum! I am all too familiar with both camps. Funny thing is, I find myself somewhere in between the two. The head of the neurodiversity group is completely offended by the assertion that autism could be the result of something toxic or that something is "wrong" and is furious that others are trying to shove their viewpoints down people's throats, yet she is doing the very same thing by demanding they stop trying to "fix" these individuals and celebrate them the way they are!

It's interesting, as I am not treating many aspects of my Asperger's, as some of my quirks, as some might call them, are also the very things that make me excellent at what I do and incredibly artistic. When those things are treated, I lose my edge. I made the decision to keep my uniqueness, with the price tag being some significant struggles with anxiety, OCD, sensory integration dysfunction, and severe depression when things get too overwhelming. I have learned to modulate many of those issues myself through a tremendous amount of work, though it's still not always totally under control. So although I understand her point to some degree, I also look at my son, who is now capable of independence because of the interventions that were provided. He was sick and very miserable, as was my daughter and I, prior to some of the interventions that seriously improved the quality of our lives. It is not the right of ANYONE to vilify another for pursuing the assistance needed to improve the life of a loved one who is struggling. What is right for you is fine, do not assume it's OK to impose that upon someone else.

I find this quite disturbing, to be honest. As an individual with an ASD who was suicidal for many years and quite dysfunctional, I can tell you first hand, I WAS MISERABLE. I am grateful beyond measure that I have learned what I have about this disorder, providing me with the tools to improve the portions of my life that were unbearable. One of the comments made in the article was, "Chew now believes that autism treatments and so-called cures are a waste of time. She said she'd rather see Charlie, now 11, benefit from better support services and education. My son is who he is. He's not going to change; he's always going to be Charlie. And at the same time, I loved him just for what he was," Chew said." WOW! Good thing I didn't say that about my 9-year-old son Chad, who was severe and nonverbal, yet now indistinguishable from his peers. Can't imagine where he'd be now had I taken that stance. Again, that's a personal choice, but don't force it as a rule of thumb on all involved.

Chad had some SIGNIFICANT underlying medical problems that caused a tremendous amount of pain and contributed incredibly to his inability to navigate this world we live in. He will always have autism. He will always be unique. I love that about him! But he is no longer in pain, he is functional, and as a parent I no longer worry about what will happen to my son when I am no longer here to care for him, as he can care for himself and live independently. THAT IS MY GOAL. Not to change who these individuals are, not to rob them of their identities or uniqueness, rather to provide every opportunity available to insure they have access to the care needed to eliminate any physical illness that is causing pain and dysfunction, assist them educationally and therapeutically to insure they can function to the best of their ability, and to celebrate their uniqueness in every other aspect. It's a package deal! They are who they are, but let's help them to be the best they can be. I just don't understand the fault in that. My son would agree, as would many others!

I agree that these kids are remarkable gifts from God, but even with neurotypical kids (and I use that word VERY loosely, as what is normal anyway, right?), as parents we ought to seek to provide opportunities for our children to reach their fullest potential, WHATEVER THAT IS. Accept them as they are, yet strive to help them be their best. What sane person in this world can say that there is any single individual who could not stand SOME improvement? AND..... to take that a step further, you may dig in a big way, accept and celebrate the individuality of your child with severe autism, however, are you insuring that you have someone else lined up to dig and celebrate them as intensely as you do when you are dead and gone? I sure hope so, because as much as you might like to think it's the responsibility of this universe to learn to accept and accomodate your child, that will NEVER happen universally, so plans have to be made for long-term care if you are making the choice to "accept them as they are" and not pursue improvements of any kind.

Sorry, know that's kind of blunt, but really, let's wake up and smell the coffee here. I TOTALLY celebrate the uniqueness of EVERY individual, ASD's or otherwise. However, I ALWAYS believe in striving to better ourselves whenever possible. I also know for sure we will all die at some time, and it's in EVERYONE'S best interest to insure our children have, to the best of their ability, the skills necessary to navigate this harsh world independently, or they will not be in a pleasant situation once we are no longer here to care for them and love them, as in many cases and with few exceptions, only a parent can truly do. Celebrate them all you choose to, but you better have a plan B if you get hit by a bus!

ASD's are not curable, yet there are so many aspects that can be addressed to improve quality of life and address painful medical issues that are often underlying the diagnosis. We want health, happiness and the ability to live independently, not necessarily only a "cure". And truthfully, and as I have already said several times, what is normal anyway? I mean really! So, all that to say, two very forceful opinions between the sides, and frankly, both are wrong in some aspects, and both are right in some aspects. It should be left to the families to decide how they choose to handle the lives of their loved ones. Our job should be to educate and make sure everyone has the knowledge and information on the topics at hand to make an educated decision, not force our opinions upon others. I believe if you are correct in your stance and a good educator, you should be able to sway opinions without force and rhetoric, but rather simply with the sharpest of all tools, information. If shifting public opinion requires you to beat others over the head and threaten with God knows what, how strong can your point really be? Yet I see both sides resorting to name calling, passionate slandering, and full on hatred of anyone who does not embrace their particular stand. It's absolutely deplorable on the part of all those involved and it needs to stop NOW. For goodness sake, get over yourselves and let's think about the kids first for a change. At some point I would think the need to truly address these issues should begin to outweigh one's need to be right.

Now on the flip side, it is also incorrect to assume that everything autism is caused by heavy metals and environmental toxins. Every one of these kids is as individual as their finger print and there are a multitude of underlying issues that contribute to the onset of these disorders. Don't get me wrong, I know that these play a role in a large percentage of individuals with ASD's, however, not in all of them and in varying degrees. There is no one thing that causes or cures ASD's. Not at this point anyway, and I seriously doubt that will change in the near future as there are just too many factors involved to boil it down to one thing. There are so many cumulative factors playing a role in these disorders that there is no way to identify a one and only smoking gun. Yes, thimerosal is a HUGE problem, live virus vaccines and combination vaccines are a problem in children with dysregulated immune systems, environmental toxins are a problem, and the list goes on. I could continue for days listing the many things that we, our society, are imposing upon individuals, many of whom have a genetic predisposition to begin with, that is increasing the onset of these neurological problems. Common sense would dictate either elimination of or significant changes to those things we know statistically have played a role in the lives of many being altered. Having said that, just because there is no one-size-fits-all cause or cure, does not mean these issues are not a serious problem and likely trigger for many individuals, just not for all!

I can remember early on in this journey, one of the most frustrating issues as a new parent of a child with autism was trying to navigate the plethora of information and opinions out there. I could ask 50 people what I should be doing and be told 50 different things, with each absolutely convinced theirs was the ONLY correct solution. As a parent trying to identify the right course of action, this is enough to shut anyone down in their tracks. Just because something may have been effective for Johnny does NOT mean it will be effective for Jane, and trying to force your existing beliefs on what the issues were with your child, does not in fact insure that will be an appropriate intervention for anyone else, who has an entirely different system and set of circumstances, even though there may be some similarities.

Using common denominators and past experience to identify a starting point in treatment with many of these individuals is well within reason, however, individualized testing to identify their specific issues and much tweaking is absolutely critical. Even though many of these individuals have some similarities, there are equally as many differences, all of which have to be taken into account and weighed in the treatment process. As said earlier, there is no one-size-fits-all treatment protocol, as everyone is unique and has their own specific issues that must be addressed.

I have run across entirely too many parents and treatment providers who fall into the dangerous rut of believing their way is the only answer. I have seen parents go from practitioner to practitioner, each having a different view regarding what the problem was. After spending hundreds of thousands of dollars on treatments, often none of which were effective because that was NOT their specific issue, they are now broke and don't have the funds to pursue what could actually be the real underlying problem. Don't get me wrong, I'm sure those treatments were effective for many, but not for everyone! One of the things I tell parents when I teach conferences is that anytime you run across someone who says "Here's what we do to treat autism," RUN! There is no here's what we do. It has to be catered to the specifics of each individual.

So I hear many in this camp calling those in the neurodiverse ranks all kinds of interesting names, yet I see very little compassion and recognition that although they may not agree with all of what is said, there are some valid points as well. I hope if nothing else that perhaps this post will cause us all to take pause and consider the fact that none of us have all the answers. We all have some good info and some not so good info! We all have a tremendous amount to learn and should be recognizing that the more we learn, the more we know we do not know anything! There's nothing wrong with sharing opinions, but there is a great deal wrong with force feeding them to others, regardless of what camp you reside in!

I guess I could only wish that all that time and energy being used to tear one another to shreds could be better funneled into working synergistically to accomplish for the masses what we will never get done if we continue to splinter off begrudgingly. Such a waste and it accomplishes nothing beyond fueling the ongoing fued and increasing the distance between the very parties that should be able to work in a common bond on behalf of these incredibly wonderful children.