Rethinking the Definition of Autism and Aspergers

By Elise Ronan – The Times of Israel - Elise is the parent of two youngmen on the autism spectrum. She has been a volunteer special education advocate in …

Once again we have a mass murder and once again the media-whores are trying to blame it on aspergers, guns, misogyny and “white privilege.” When the reality is that the issue is mental illness and how it is treated, or not treated, in the United States. The family was fast to let the world know that their sociopath-narcissistic-highly disturbed-son had been diagnosed with aspergers. Not certain why that is even relevant. It is not that this family didn’t try to get the authorities involved. They actually alerted the police, who instead of searching his apartment or trying to get him involuntarily committed, found this murderer charming. Overly charming, by the way, is how most would describe every sociopath. Yet the question becomes, what is the point of letting everyone know about the autism diagnosis?

Yes, aspergers is the diagnosis of the moment. When doctors can’t figure out what category their patients fit into, they reach for something that is all encompassing. It just so happens that this decades all encompassing mental health diagnosis is aspergers. Before that it was ADD. Before that…who knows, but it was something. The problem too, is that psychiatry is a science that is not necessarily quantifiable in the same sense that something physical is quantifiable. Psychiatric definitions and understanding change as society changes. The “powers that be” in the psychiatric community consistently alter their view of what is a mental health disorder, and constantly change their opinion on what is, and is not, a cause for mental health concerns.

An additional problem that you have in the community is that so many of these book-learned people have never really dealt with autism or aspergers. They only read a book; took a class; heard a lecture. But they have no real experience in dealing with anyone with autism. A lot of times they simply look into the DSM and pick out something that sounds good and may be applicable to the situation at hand, something they simply cannot define for certain at the moment. That is exactly what happened with the boys when we visited one particular therapist.

Even though they had been given the dx of aspergers, when this particular therapist filled out his forms for insurance, he went into the DSM and looked for the dx that listed what he thought was more applicable to the boys. I argued with him that they had a relevant diagnosis that was appropriate. But he decided he knew better because as he pointed out to me, the DSM listed 4 applicable characteristics of “autism” instead of aspergers, which as far as he decided was more appropriate to the boys. He had never actually worked with, or had experience with, anyone with autism or aspergers. We went to him because he was used to working with adolescent males and highly recommended for that purpose. I had not realized until that moment that there really was a huge difference in approach when dealing with adolescent aspergeans and NTs.

Yes; we ended up leaving that therapist, but not because of this difference of opinion. When my younger son was having trouble with his 5th grade special ed teacher, instead of defending my son, he supported the teacher. Instead of coming up with some relevant classroom procedures that needed to be put into practice for my son, or relevant organizational skills that he had to learn, and that the teacher had to work on, this therapist decided that the teacher couldn’t be incompetent. The fact that he was having issues according to this therapist, had to mean that my son needed some heavy medication like risperdal or even an even stronger antipsychotic. (FYI- I am not against medication. I am against unnecessarily medicating.) According to this therapist there was no way that the teacher could be a gross incompetent,even though he had never met her, spoke with her or interacted with her on any level. Someone who is incapable of seeing the failings of another “professional,” is not someone you want working with your child.

As a note: I had not been told by the school district that this particular special ed teacher had been informed earlier in the year that she was not receiving tenure due to not meeting teaching standards. So she not only didn’t do her job vis-a-vis my son for the year,  but his entire class. (He was a fully included student with special support. And because the support was inadequate the entire class suffered.) In fact, she actually lost my son one day as well and tried to blame it on other people. The district did force her to go on medical leave half way through the year and put in a substitute, which helped the situation greatly. But unfortunately he had already been set back tremendously in his development. It took years and some very hands-on competent teachers to bring him back into the groove.

Meanwhile, I have been having a change of mind. The fact that the definition of autism/aspergers has been reworked by the DSM may not in the long run be entirely bad. I know that the aspergers community is very angry and there are psychiatrists who are unhappy about the methodology used to decide upon these new criteria. But perhaps when it is harder to diagnose someone with aspergers/autism, therapists and psychiatrists will actually have to figure out what is truly going on with a patient and not just decide that everyone with social issues must have aspergers/autism.

Autism is not simply about someone not understanding social issues. Autism is an entirely different brain wiring- a different operating system so to speak. It means that people see the world differently and interact with the world differently than an NT. It means they learn differently and work differently. It means they are able to think outside the limited box that the world has set up for itself. Autism does not mean that those with the dx are sociopathic, psychotic, violent or devoid of the ability to function within society on a healthy basis. These are all very different mental health issues. Quite frankly no, every sociopath is not an aspergean and every aspergean is not a sociopath. In fact one has nothing to do with the other.

The problem that you face is that the psychiatric community has made a habit of giving our children a list of dxes. These co-morbid issues are what cause the problems in society. While our children may have aspergers, they can also have OCD, anxiety, ADD, bi-polar, schizophrenia and (sadly) may even be a sociopath. But premeditated violent tendencies associated with the most extreme forms of these mental health issues have nothing to do with autism. They have to do with the comorbid issues. In fact, most of these co-morbid issues also do not result in violence or outward aggression either.

The interesting issue is whether under the new DSM definition would any of those with the most severest form of mental health issues even have a comorbid dx of any kind of autism? Would the psychiatric community be forced to actually reevaluate their patients to ensure that there is a real review of what is going on with their patients instead of dumping them into the mental health issue of the moment? Will there be more oversight and more accountability of the psychiatric profession instead of the media and society going  “autism” monster hunting?

Frighteningly, we have to be ever vigilant that the “witch-hunters” do not once again try to come after our children because of the reporting by an irresponsible media, police inaction and the psychiatrists who did nothing to stop a murderous rampage. My boys have no problem with telling everyone they have aspergers. They are proud of who they are. The problem is, that society’s ignorance about mental health and autism causes others to have problems with them, and it is this lack of societal education that is the real threat to their future.

A version of this blog post originally appeared in Raising Asperger’s Kids

More in this blog

• Mental Health Awareness: Wanted Compassion and Understanding
• To the Jewish-American Community: What is wrong with you?
• Yom Hashoah, the 3-D Test and Those with Special Needs
• The Season of Freedom and Special Needs Parenting
• April is World Autism Awareness Month: Heck, We are Autism Awareness

Technorati Tags: Austism,Asperger's,Autism-Warrior-Parent,Awareness,Guns,Misogyny,Mental Illness,“White Privilege”,Shootings

Mental Health Awareness: Wanted Compassion and Understanding

By: Elise Ronan | Ops & Blogs | The Times of Israel

Impressions we make are essential to how we view each other. Social awareness, some call it mindfulness, of the unsaid signals we emit are part and parcel of human interactions. But what happens when a person doesn’t understand the nuances and the secret handshake of unwritten social rules? What happens when these people become so overwhelmed by their environment that they exhibit actions, such as a meltdown, inappropriate yelling – laughing, or experience a panic attack complete with hysterics and uncontrollable crying?

It’s one thing if the helpless person involved is a child. Most of society has all sorts of qualifiers for a child that has issues and mental health concerns. But, as a person ages, society’s tolerance for such actions not only becomes mute, but in most part disappears altogether. Mental illness becomes an unspoken burden in part because it is sadly ignored,  swept away by families due to societal derision. As a person ages the stigma associated with mental illness becomes as much of a weight as the illness itself.

Society lacks basic knowledge about mental health issues. And in many ways tabloid journalism is to blame. The issues are sensationalized, especially when a violent individual commits some unspeakable crimes. (Ignoring the fact that most heinous crimes are actually committed by person considered sane.)The news will drone on and on about a subject that they know nothing about, simply making life unbearable for those already viewed to live on the fringes of society. The uneducated make conjectures, elicit ignorant opinions and promote fear instead of trying to enunciate understanding of what mental illness is and what it is not.

-Mental illness covers a wide range of illnesses. HERE Everything from ADD to autism to panic attacks to PTSD to the more severe forms of schizophrenia.

-The overwhelmingly vast majority of persons with mental illness are NOT violent. In fact they are more likely to be the victim of a violent crime than the perpetrator. HERE

-With help recovery is possible. HERE

It is important to remember that those with mental health illnesses are trying their best. What they need is understanding and acceptance. We can talk about accommodations and we can talk about civil rights until we are  “blue in the face,” but in truth, if someone is uncomfortable around a person with a mental illness, there will never be friends, employment and a successful navigation of society. Can comfort be taught? Can compassion become part and parcel of society?

First, what society needs to understand is that meltdowns, panic attacks, “episodes” are personal to the person. It is how the effected individual is feeling at that one given moment in time. Their being overwhelmed is about how they are processing the sensory information before them. They are in that space and they cannot necessarily remove themselves from that tornado that is their mind. (And as I have said before this inability to see beyond themselves-mindblindness- becomes more problematic as a person ages. A meltdown by a 10-year-old is taken alot differently than a meltdown by a 200 pound, 6 foot tall, grown-adult-male.) HERE, HERE, HERE, HERE

Second, yes, once their “episode” is over, they are capable of understanding what has happened. They realize, once they feel better, if they have been mean, cross or had been inappropriate. “I’m sorry,” is something heartfelt. Apologies abound. They truly feel embarrassed when they have digressed in the presence of their peers and they truly feel shame.

But unfortunately if their actions have frightened someone, scared off a potential friend, or have lost them a job, sometimes there really is no going back. What is lost is lost. The question becomes how do you teach them to understand their feelings in the moment and to control themselves? How do you teach them that impressions are real and that they have consequences before these consequences are life effecting?

Lastly, so what is a parent or caregiver to do? It is trying to teach the idea  that it is the little things that become important when talking about perception. It is the little things that become important when preparing someone for the future.

Walking out of a room, class or environment when they start to feel overwhelmed is a typical self-help method. (Making sure that they leave the room before they exhibit any negative actions is important also, and part of a long process of education.) Trying to get them to understand that their “tone” in a conversation is essential to how their emotional state is perceived is important for social interactions at both school and work. Teaching them the appropriate way to horse-around (even though it seems that in a school setting typical male bonding is seen as anathema in the first place in today’s world) and what to say as a “joke” in public is a good place to start, when teaching about community acceptance. Getting them to understand the necessity of therapy and medication to their own well-being. Promoting a healthy attitude towards exercise, food and self-care can also help in their navigation of the world.

But in the end we do need to accept the fact that there is also just so much anyone person can do to accommodate the world-at-large as well. We also need to understand that no matter how hard those with mental health issues do try, there is always going to be that one person who is just totally unaccepting towards them. This person will, no matter what, never forgive the ill for who they are. They will never see beyond the disability or mental health issue. Honestly, its better to teach the effected individual how to identify these antagonistic people and to just stay away from them. You can’t please everyone and honestly it’s not even worth trying.

As I have always taught my children this primary life lesson…wherever you go in life there is always going to be one “shmendrick.” The trick in life is to NOT be the “shmendrick.” That is basically impressions in a nutshell. That is the basic goal of those with challenges.

In the meantime, May is Mental Health Awareness Month. Maybe one day there will be more give and take with society. Maybe one day the partnership will actually be 50-50. But until that time we work, we teach and we hope that the stigma of mental illness will be lifted and those that are forced onto the fringes of society will be accepted, understood and welcomed into the world inwhich they live.

Technorati Tags: Mental Illness,Mental Disorders,Awareness,Understanding,Compassion,Mental Health Awareness Month,May,Mind

The Season of Freedom and Special Needs Parenting

By Elise Ronan – Times of Israel: Freedom. The Jewish people are consumed with freedom. From our very earliest beginnings we fought for our individuality and the right to be whom we chose to be. Abraham started it. We can blame him I suppose for imbuing in our genes the need to be independent; to think for ourselves; to rely on our individuality and abilities alone. We Jews, personify freedom. We honor freedom, independence, self-reliance and self-discovery. We promote this freedom of choice in the celebrations of Passover or Hanukkah or remembering Masada and Bar Kochba. We, the Jewish people, have always held tightly to our need to choose our own path. We love being the iconoclast.

But what do you do when everything you were brought up to believe in is threatened? What do you do when your freedom, independence and abilities are truly called into question? When that inherent need to take charge of your life is no longer part and parcel of who you are? What do you do when you know that even with all the love that you have for your child, you need help from strangers? What do you do when you realize that you cannot do it all alone? That somewhere in your soul you realize that if you love your child enough, you need to hand their future over to a “village” of people in order for your child to survive?

Now this “village” is very different than the concept of “community” in Judaism. We are a universal People, we Jews. We are distinct human beings and at the same time part of a whole community. We are the inheritors of a legacy that has shaped human history and at the same time we are individuals with wants, needs and desires. We are ourselves and at the same time we are the embodiment of all Jews.

But a village that you create for your special needs child is something totally different than a community. When you have community in Judaism you begin by saying I am a part of something. It is a positive uplifting experience that gives you pleasure, succor and direction. You begin by saying “here I am.” But that is not how special needs parenting begins. Special needs parenting begins by asking “what am I to do now?” “Where am I to go with my child?” “Who will help my child” and in the end, “who will love my child enough to care for them when I am gone?” (#youmightbeanautismparentif You may have a will and a guardian picked out, but in the end you know you can never, ever die.)

The first thing you feel, as a special needs parent is fear (yes, with alot of pissed off thrown in too). Complete unadulterated, gnawing at your heart fear. Fear that takes your breath away. It changes you. You become someone else. You are no longer the you, you knew. Your soul is consumed. And you need to acknowledge something that goes against everything you ever thought you would have to acknowledge when parenting…. You have to admit that you have no idea how to help your child. You are at a loss. You feel so abjectly alone. You feel defeated in that you must recognize your need for strangers to help and guide you in this journey.

It is an interesting epiphany when you can finally realize that you need a village to raise your child. That no, you cannot do it alone. We are taught that parenting is something we pass on from generation unto generation. It is why the jokes abound about mommalies and daddalies when talking to our children. We see and hear our parents in ourselves. But that changes when you deal with a special needs child. What worked before will not work now. What was done for generations will not help your child. The concepts that so successfully raised multitudes of human beings no longer apply. Parenting a special needs child is not innate. It is a methodical thought out, wholly planned process. It is a unique understanding of parenting.

But what is most important when you finally acknowledge that you need that village is to remember above all else, that you have NOT failed. It is not an indictment of your parenting, but an acknowledgement of what a good parent you truly are to know you need help. To recognize that you cannot always be everything to your child is important. To know that there are others out there who are capable of providing support is very important. To recognize that if your child is to succeed in life, they will need more than you can give them takes parents who see beyond themselves. It takes a type of strength, something inherent in a free and independent people, to recognize that you cannot do everything all alone. Asking for help for your child takes bravery, it gets you beyond the fear.

Parenting a special needs child is walking into an unknown future, just as the Children of Israel walked out of Egypt to a future without direction, and yes most of us do it without the missteps of the golden calf (well, as best as we can anyway). Because unlike those who waked into Sinai, we know that we cannot understand or have control over the future. We know no idols or talismans will protect our children. By recognizing that we need help we have proceeded past that initial soul crushing terror and are ready to produce a future for our children. We know we will have to do our best to create a happy and positive world in which our children can live. We know that we can create to the best of our ability, a village of people who love, nurture and support our child. We know that we can only do the best that we can, no more. We have acknowledged, stripped the confusion from our souls, because in the end we finally admit that we too are merely human.

We learn over years, days, hours, even minutes, that the trajectory of our lives can change in an instant. We understand that community is one thing and creating a “village” is another. We try to impart unto our children what we can give each of them and grasp from strangers, who can and in many ways become like family, their knowledge and compassion to help our children succeed in life. Freedom and independence is not always about being steadfast and singular in our outlook. It is not always about standing on our own two feet. At times freedom and independence is knowing, just knowing, when we know nothing at all.

One day during a support group meeting, someone asked me what I would have done earlier in my children’s lives. I think they were looking for some great explanation of how to handle issues and events and what I might have done differently. They were looking in some way for guidance on how they should process and prepare for certain problems that could arise. That of course is what I do to help people. Give them the benefit of my past experience. Practical and realistic supports that can help with the day-to-day. I knew they wanted specifics. But I also knew, that before you can have specifics, before you can create a program of support, before you can produce a village, you need to acknowledge the reality of the situation and recognize your own human limitations.

So I answered simply, “ I wish I had been braver sooner.” And I knew, at that moment, with that acknowledgment, that I was  finally, truly, once again, on the path out of Egypt headed towards freedom. For the first step towards freedom is recognizing your fears. Second step is not giving in.

Related:

83 percent of brain injury vaccine compensation payouts were for autism caused by vaccines

Technorati Tags: Special Needs,Parenting Autism,Israel,FReedom

Inclusion for those with disabilities requires educating society

Israel Times -. Ops & Blogs ->  Elise Ronan:  Last week in Tel Aviv someone fired shots into a house that is the residence for people with intellectual disabilities. The government is investigating and every politician emitted the proper soundbite. But no one actually talked about the underlying cause of the incident… lack of education, a refusal to understand how inclusion works and an accepted pervasive ignorance about persons with disabilities.

Society, all societies, not just Israel, can talk about inclusion and acceptance of those with disabilities, but until you learn to educate the general population with the truth about those who are different, incidents like what happened in Tel Aviv are going to continue everywhere. Whether those who thought nothing of endangering these vulnerable people actually understand what an intellectual disability means or how those with disabilities function in society is not immediately important, of course. They committed a crime. They should and must be punished.

Yet it would behoove society to try to learn and rethink how it views those with disabilities. I am reminded of what actually happened when they brought my oldest son back in district in our little hamlet in the USA. He had previously been assigned to an autism only program. It truly was a good situation for him and helped him get over some debilitating hurdles. In the meantime he had progressed and grew as an individual and that placement was no longer appropriate for him. It was time for him to be included in a regular classroom.

Now here in the USA there are many different manifestations of classroom organization when dealing with students with disabilities. Our school district devised a collaborative teaching program with one-to-one support for him and several other autistic children. This means that at any given time in a class of 20 students there were at least 3 adults in the room; the main teacher, a certified special education teacher and one paraprofessional (there could be upwards of 3 paraprofessionals if needed). Meanwhile there could never be more than 5 students with disabilities in that classroom, so everyone received the needed attention, and those students without educational issues would receive the education that they were also entitled to receive. You might assume that a thinking parent would be overjoyed with the added adult support in the class. Well you would assume wrong.

Needlesstosay, all hell broke loose among our very liberal-progressive neighbors. The “not in my backyard syndrome” reared its ignorant and ugly head. Meetings with the school district were called. Lawsuits were threatened. My highly educated neighbors called my son names you don’t call an adversary, never mind a disabled child. Luckily here in the USA there are education and civil rights laws to protect children like my son. The district was in their right to include him in a regular class setting. So my son’s right to an education was protected. But the people that live in the district never forgave him for having the nerve to stay here to be educated. Parents made sure to exclude him from every aspect of childhood and did their best to alienate our family. (We stayed because the school district itself was doing right by our children.)

Meanwhile I did what I could to help the general student. I volunteered through our Parent’s Association. My goal was to show that I was there to work with all students and to help all families. It was my way of saying thank you to the school district at large. I wanted to show my neighbors that I understood that everything wasn’t always just about my child, but that every student was important.

Yet, to my neighbors my son’s existence was still seen as a drain on their children’s education. In fact a rather interesting recurring theme continues to this day that having “children with special needs” in classes prevents their “normal” offspring from getting into an Ivy League College. Other parents told me that they resented having to pay for my son’s education since he would not go to college. (Little did they know that my son would graduate with honors from college, and would also attend graduate school.) I have been asked why do we spend money on “Cadillac” programs for those with disabilities instead of being more realistic and spend the money are the more worthwhile students. (Seriously, you can’t make this stuff up.) These people seem to forget that in the USA a child doesn’t have to be destined for post-secondary education, or have an above average IQ, to be entitled to a public k-12 education.

On the other hand, three years later the situation was extremely different for my younger son. His classmates not only accepted him, but these students took it upon themselves to make sure he was included and welcomed into the school. They took it upon themselves to make certain that he had a good time and enjoyed his time in school. They took it upon themselves to make certain that no one and nothing upset him or hurt him. They became his barrier to the world and his support. In fact, these students prided themselves on how happy and functional he was in school.

The difference? Education? Understanding? Yet most likely, better parenting and a better upbringing. I remember talking to a parent in my younger sons class who was thrilled that their typical child was in a collaborative program. “Three adults to 20 children…how great was that!” I remember she said to me that she was trying to figure out how to get her daughter included in these classes throughout her education. These parents understood that persons with disabilities were not only a part of life, but they also added a unique and necessary dimension to their children’s education. They saw the positives of the collaborative program for all children involved.

Sadly however, I have been informed that my youngest’s experience in school was the exception and students with disabilities are still alienated and resented in our community. I honestly have no real answer for this. You can’t even say that it’s because we do not live in a Jewish world. Half of my community either lives in a Jewish household or has one Jewish parent. You can then ask, is it the lack of Jewish education and an understanding of Jewish values? How successful then is Jewish Disability Awareness month? What exactly are the rabbis teaching? What do those mitzvah projects really mean in the long run? Is it a loss of the idea of community and have we forgotten what it really means to care for one another? But somehow I also don’t think its just a Jewish issue either. I doubt that dehumanizing those with disabilities is something that is taught in the New Testament. Believe me there are as many who go to church every week in our community as attend Shabbat services. Perhaps the reality is that no matter where you live and no matter how much book learning you have, there is no guarantee that the house you grow up in will be filled with a concept of humanity, charity and acceptance.

So arrest the horrible people in Tel Aviv who think they can frighten those who are born different through no fault of their own. Arrest those who think that terrorizing the weakest members of society is a positive endeavor. Arrest those that think committing a crime against the disabled is not a crime. But in the end, it is society itself that needs to be educated about intellectual disabilities. It is important to dispel the myths and ignorance that surround all disabilities, but especially those with developmental and intellectual disabilities. The disabilities that you do not see are the ones that garner the most myth and libel.

Education is a societal endeavor. Just telling people to stop being ignorant does no good if you don’t use your bully pulpit to inform and remind society just what it means to be a civilized nation. Sadly no matter where you live, it appears that we all have a long way to go to reach our own notion of humanity.

About the Author: Elise is the parent of two young men on the autism spectrum. She has been a volunteer special education advocate in her town for over a decade. Elise specializes in the practical aspects of raising special needs children. Elise is also a member of the Blogging Group: The Watcher’s Council.

Technorati Tags: Special Needs,Autism,Israel,Awareness,Education,Intellectual Disabilities