What is the Impact of Jenny McCarthy’s Autism Cure Claims To Those Adults With Asperger’s Syndrome?
What is the impact of Jenny McCarthy’s experience with her son Evan wherein, according to McCarthy, her son is cured? Is he cured? Do people with autism or Asperger’s want to be cured? Is it something that needs fixing?
Jenny McCarthy, a self-professed advocate for her son Evan, who was diagnosed with Autism, and for other children who have been or will be diagnosed with autism, has written a memoir about her experience “Louder Than Words: A Mother’s Journey In Healing Autism“
The main thrust of McCarthy’s memoir, aside from telling the story of a very dedicated mother who has fought hard for her autistic son, centers around what McCarthy terms Evan’s “recovery”.
McCarthy, appearing on The View, Live with Regis and Kelly, Oprah, and Larry King to name the shows I saw her on, in each interview first spoke of Evan as recovered from autism. She would then, later in each interview, sort of back track from the word “recovery” and point out that while Evan does now attend a regular school and interacts much better and so forth, he does still have challenges.
What is the impact, generally, of this on those with Asperger’s Syndrome?
This might be a very difficult thing to assess. However, the specific autistic challenges that McCarthy’s memoir deals directly with the journey that the intervention strategies, treatments, and interventions, of more “classically autistic children” require. While not agreed upon by all professionals totally, there are doctors who support McCarthy’s strategies and results. Though the doctor who was on with her on Larry King was careful to say that results of these treatments vary widely in autistic children and the reasons for that aren’t fully understood. It is agreed, however, that the earlier these alternative treatments are attempted the greater the likelihood of favourable results.
It seems to me that to some significant extent a lot of what is being fought for by McCarthy and others for their autistic children are things that most children with Asperger’s Syndrome don’t ever lose (totally). Things like some eye contact, speech, the ability, (on a wide spectrum that varies in degrees) to be able to relate and be interactive. The question that begs asking here is do those with Asperger’s even require the same intervention? Will they benefit from the same things that McCarthy’s son did?
What is the impact, specifically, of this on those who are adults with Asperger’s?
I know for myself, speaking as an adult with Asperger’s who didn’t find out until I was 40 years old, it personally causes me a little bit of grief. Grief that I didn’t find out I had AS when I was a child. Grief that as a female much of what I was caused difficulty by was even more invisible than it is for most young aspie boys.
Grief that causes me to wonder, briefly, how would my life have been different – or if in fact it would have been different – if in fact it would have been different – if I had a mother who went to bat for me (which I did not have at all) like McCarthy has for her son. Grief just thinking about the what-ifs which is not a place I recommend any adult with AS stay in long. But it is only human to go there at times.
Self-reflection on these feelings and this grief, I think is necessary at times, for greater self-understanding, and in the end, a greater self-acceptance too.
How it impacts me, as someone on the specturm, who has Asperger’s is that I wonder about the quest to normalize autistic children. It’s a catch-22 of sorts. It hits at the question, are we all supposed to be the same? How does this desire and/or quest to make every child “normal” effect the way that we value or fail to value inherent differences? Does it send a message that what is perceived and defined by
many as a disability is a less than way of being. This is an attitude that leads to discrimination and marginalization of inherent worth.
McCarthy’s memoir, “Louder than Words” does tell a compelling story. It does offer hope for a growing number of parents and their autistic children. The statistics now say that 1 in 150 children will be diagnosed with Autism. Those numbers keep rising. Autism, in all its forms, is an epidemic, in North America for sure, and perhaps also in other countries.
As an adult with Aspeger’s Syndrome, however, it feels like a catch-22 of sorts to me – this entire issue of getting the most autism out of a child type of thing. For me being on the autistic spectrum continues very much to be an on-going paradox.
It has its amazing aspects and it has its challenging, frustrating, and still at times, painful and/or emotionally difficult aspects for sure. The question that comes up for me is would I really want to be changed now if that was possible or ever to be possible? I think, in spite of everything, my answer is – no. I have come to value my differences. I have come to find ability from the depths of what are challenges and inherent differences between myself and those who are neuro-typical (NT). In other words I am finally finding peace with being who I am. I am who I am in all that means. Asperger’s is not the some total of who I am but it is an important part of who I am.
I know that the important distinction (perhaps among many others) between Asperger’s and more profound manifestations of autism – or classic autism – has a lot to do with the differences that those of us with Asperger’s have in terms of being verbal, being able to communicate and not being “classically trapped” in a separate totally internal and separate world. However, I will make the point that there are times in my life, even now, when while I might know differently intellectually, there are times when being an aspie, primarily in the social arena, leaves me feeling like I know a little bit about what it might like to be that more classically autistic child. Socialization, is still, at times, and in many ways, for me, not at all like I’ve heard it described by NT’s and it can still cause frustration, pain, and lostness. But, as this is my own personal journey through this life, I take it that there is great purpose, even in that.
I do at the same time very much recognize the battle and the validity and important of this battle for these more “classically autistic children” however. Many of them are reported to seem rather normal until a certain age (or set of circumstances – some believe after vaccinations for example) when suddenly they withdraw inward and they stop communicating, stop making eye contact and more and more are lost inside of themselves in more profound forms of “classic autism”. To be saved from being trapped within I think is huge and important. To be helped to be able to communicate and to interact – to whatever degree – can make a life with autism much more liveable, especially for those around that child who love and want and need to interact with them.
The interesting thing in all of this too, in my opinion, is that much of what McCarthy talks about has having helped her son Evan, the wheat and gluten free diet, and addressing the yeast in his system, for example, along with the other methods used to “rehabilitate” him, referred to still as alternative treatments, do not work the same for all children with autism. Even all the children who are now able to take advantage of what McCarthy did for her son, the results vary widely. I wonder what information, if any, this fact, may well yield that may shed more light on the issue of whether or not what McCarthy’s son and others like him have actually experienced. Is it recovery? Does it have to do with the degree to which they were autistic? Can this be measured? It seems in many ways, for me, to raise more questions than this held out “cure” actually provides.
And another question that crosses my mind is of course related to causation. Can autism really be cured without knowing what causes it? What leaves one child classically or more profoundly autistic and the next with Asperger’s Syndrome, for example? Is it a case of different causes?
Is Jenny McCarthy and her son Evan’s journey revolutionary? Is it more typical than is known? Will it become more typical? Is it too cost prohibitive for way too many families?
And of course, I have to add here again, that there needs to be services and supports put in place for adults no matter where they fall on the autistic spectrum. Not every parent as McCarthy’s fortitude, reserve, or even financial choices. Not all autistic children treated like Evan will have the same outcome. Therefore, it is not just adults with AS that need services and supports because today’s aspie kids and autistic kids will be tomorrow’s invisible adults on the autistic spectrum for whom service is only a wished-for thing and certainly is not, in reality, tangible in any meaningful way.
© A.J. Mahari October 2, 2007 – All rights reserved.
A.J. Mahari is a Life Coach who, among other things, specializes in working with those with Asperger’s Syndrome and their partners, relatives, or friends. A.J. has 6 years experience as a
Life Coach and works with clients from all over the world.
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The Legacy of Asperger’s Syndrome and Being Diagnosed As an Adult
There is a legacy left in the wake of childhood and adolescence lived unknowingly superimposed upon what is the foundational hard-wiring of difference and social disconnectedness that are central to the reality and scope of Asperger’s Syndrome and that form different ways of thinking and perceiving that are outside the ebb and flow of the landscape of the stratum of social terra firma. A legacy of defectiveness that my personhood was engulfed in and defined by through the judgment of the NT masses.
A legacy created by the reality of not having been diagnosed and informed so many years ago.
When the way one thinks, perceives, and experiences the world is then challenged and one is labeled weird, bullied by others for their differences as I was as a child, the legacy is one of ominously oppressive observation that leads to a negative association of all that it means to be who one really is. Being who I was as a kid was definitely not okay for so many reasons. Reasons that all these years later are all befuddling and bound together into one heterogeneous conglomeration of massive weighty wearisome foreboding familiarity.
Never mind the underlying reality of the social impairment of Asperger’s Syndrome the obliteration of any competent feelings of esteem and worth for who I was were annihilated. I fell of the wheel of life. Little did I know all those years ago that the wheel of social life that it felt like I actually fell off of was one that I never truly got to ride in the first place.
The reality of the social impairment and disconnectedness of the Asperger’s that existed underneath all of my experience unbeknown to me until I was 40 was formidable and painful and has definitely left in its wake an aching of longing as a legacy in my life. A longing that has been misleading. A longing that really wasn’t ever mine. A longing for all that I was told I was supposed to want, supposed to be, supposed to do and supposed to achieve, learn and be adept at. The longing was driven by how others defined me. It was driven by what others thought was who I should be, how I should be, what I should be interested in, what I should and should not pursue.
This long-enduring legacy in my life – this Asperger reality – cast a wide dubious and damaging shadow over my perception and experience in life and my psychological understanding of myself. There is nothing short of heart-ache associated with the great lengths that I went to try to pretend to be normal. I so tried to be what I thought it was that everyone else was. I failed miserably all over the place, and in each and every stage of life. (socially)
As an aside but also illustrative of the legacy of this hidden Asperger reality in my life, I was a lesbian growing up not knowing that, either, in a world that tried to teach me what my role as a taken-for-granted heterosexual woman was expected to be – that I would grow up, get married, and have children. When none of those things were unfolding in my life in my early and mid-twenties I can liken that experience somewhat to finding out about having Asperger’s and to having been banging my head on my Asperger wall as hard and as often as I pounded my psyche into the wall of sub-par woman for not getting married or having 2.5 children, to say nothing of the dog and the white picket fence.
I have managed the dog but that’s all of that dream that I was told I wanted that I could make come true. After all it was never my dream. It was society’s expectation of me. It meant I was flying in the face of a cultural norm. That’s lonely territory, but barely when compared to being socially clueless at the hands of what was most of my life a well-hidden and totally unrealized and overlooked enigmatic entity – Asperger’s Syndrome.
Legacy handed down from the past. A past in which a neuro-typical world tried to ram this round peg into its square hole over and over again. That took its toll. Legacy, the word, can also pertain to old or outdated computer hardware, software, or data that while it still may well function, does not work well with more up-to-date systems. That’s how I feel in a way. I feel that I do still function and in a way I have always functioned but much like an old computer functions, in a very tossed aside and not appreciated kind of way. I function differently from the NT masses just as an older computer functions differently than a newer one. It may not be adept at all the new bells and whistles of its social and user-friendly software but leave it to its own device, literally, and it will still get its job done, in its own way and its own time.
- Inside My Asperger’s Experience Audio Program
- Asperger’s Syndrome and Adulthood From The Inside Out Ebook
Falling Off The Merri-go-round of Life – A Ride I Wasn’t Ever Really On
My childhood was a world unto its own in so many ways as I look back on it. I remember my first day at grade school, kindergarten, I was four, almost five years old. I had been led to school by a neighbour girl after my mother had asked her mother if she would take me to school that day. This girl, who lived down the road was all of five. She was however more schooled in the ways of the world than I was. As we arrived at the school yard I was lost. I felt as if it all wasn’t really real. It was too much. Loud yelling and playing and screaming. Too many voices. Too much noise. The sun was so bright. I felt hot. I felt dizzy. I felt overwhelmed. None of those feelings were foreign to me, even at the age of four. I felt exhausted and the really alarming part of my day was yet to unfold.
With all of this play on the playground, all of the frantic mind-numbing activity, suddenly there was this very loud bell that sent a shrill pain of panic right through me. I didn’t know what was happening to me then or why. I just ran. I bolted. I took off. I ran all the way home and in record time. That was it. I was four and already I had enough of this normal life out in the what was such a foreign world to me. That bell had just blown a hole clear through any sense of being that I might of had. It had assaulted my entire existence.
I was of course dragged back to school, kicking and screaming by my mother. Once the bell was explained to me I learned to live with it. But, I could only live with it after I had made a point of knowing when it would go off and paying particular attention to that. I would worry about it and anticipate it long before its scheduled two rings each day. I managed to survive the bell ringing because I was able to plug my ears and somewhat protect myself from its daily assault on my being.
School, the merri-go-round work of childhood, was for me the very un-amusing ride off of which I fell abruptly, brutally and in many lasting ways. It made little sense to me for so long because I love information and I always loved to learn. I just could rarely go a whole day at school with all the stimulation, noise, and light that assaulted my senses in ways I had no reference point from which to understand.
As l recall from my childhood, while things were never really alright in my world, those shaky anxiety-producing experiences morphed into monumental trepidation of mammoth proportions when it was time, at the age of 12, to go from grade school to junior high school. It was a change I simply could not and did not cope with. I never knew why. From that point on I was on a mission to just opt out of what my imposed daily routine was. I had no way to cope with all the things that inundated me endlessly in all of the chaos that was class after class in sprawling buildings (we moved twice when I was in my two years of junior high) that I could never master finding my way around in.
Ironic that I would often get lost as I did in high school too. The getting lost just added to the reality of the fulility of even trying to be there at all. My school struggles left me feeling so damaged, so less than everyone else. I never dated in high school. I didn’t have friends at school and except for answering the odd question asked of me by teachers most days the whole day would go by and I wouldn’t utter a word. I talked to no one. I was suffering and suffering badly in so many ways. Some ways I found out about in my early 30’s as I dealt with mental health issues but I wasn’t really going to be able to put it all together in a way that imperfectly as hell made perfect sense until, at the age of 40, I found out that I had Asperger’s Syndrome.
- Inside My Asperger’s Experience Audio Program
- Asperger’s Syndrome and Adulthood From The Inside Out Ebook
When It Hurts – And it Does Hurt
Though I did not know I had Asperger’s Syndrome, as I said above, until I was 40 years old there was always its palpable pain present in my persecutory experience of what it meant to just fight to exist. So often so much hurt. The lights at school hurt. The cafeteria noise hurt so much I retreated to eating my lunch alone in the washroom.
I just couldn’t relax enough amid the noise and lights of the cafeteria to actually swallow food in there. The pressure of doing what everyone else was doing also really got to me. The socialization that was everywhere confused and overwhelmed me. I never really knew what to do.
I have lived in a world of hurt. When I could retreat to my own world I could find relief from most of my hurt. I would then only have to endure the enigma of my weirdness. The consternation of the judgment of others that I was beginning to impose upon myself. The reality that I wasn’t cutting it. The fact that all I knew I wanted and needed was my quiet dark room. My own world and to be left alone in it.
When it hurts I wonder, where is it I go? When it hurts I wonder, where is it that I am? When it hurts I wonder where have I always been? When it hurts it puts me in touch with the infinitely infallible precision with which I have always been here. Here, under all of this pain. Under all of the “supposed to’s” and feelings of being different and weird.
Here, I have always been – here. Way down deep under it all. Under it all. So under it all. Under the constriction of trying to pretend I was normal. Under the negation of not knowing how to be who I really am instead of who everyone has tried to tell me I “should” be.
What kept me so under it all was really not knowing or understanding what “it” really was or that “it” was there and that “it” had so much influence and meaning in my life. It – Asperger’s Syndrome – was defining much of my perception (socially) and my experience in life (emotionally) and I didn’t even know it.
I think I get now, at the age of 50, that when I was flooded with such grief and utter despair that caused me to feel hopeless and suicidal for the better part of my 44th year – a year I spent actually trying to come to terms with having been told I had Asperger’s Syndrome four years earlier – wasn’t as much about all that I’d come through that had to do with mental health issues as I had originally thought.
There was that for sure. There was a sense of loss that I had worked so hard to become mentally healthy and to recover from so much – I wanted to be normal – damn-it – only to come to this brick wall of “you-are-never-going-to-be-normal-period – Asperger’s Syndrome.
Okay I relent, I surrender, I am not ever going to be normal That is finally okay. I radically accept that. I did, however, in reaching to be normal recover and heal from major mental health issues and I can honestly say that it was my quest to be normal that led me to the gift of average mental health – nonetheless. There are truly serendipitous blessings in all things.
Life has taught me so many times the hard way that it is important to note and notice and be grateful for all the times we do so much for one thing, that we can’t have or may never attain, but that in those efforts, there are other rewards. Rewards in the way of increased awareness that answers questions that we didn’t even know we had – the questions that even if we could have more awareness we’d likely be far too afraid to ever ask.
Questions that when understood by the unveiling of their unasked for answers solve the riddles we had yet to even ponder in any consciously-aware way.
This is why I have come to be a firm believer that it is so important to learn to live the questions. Living the questions of our lives and ourselves and our pain leads us to answers that we have no reference point for which to search until our experience in life unfolds in the form of questions. Questions arise when we meet with obstacles.
Obstacles are not stop signs.
In my experience obstacles are detour signs that take us down the highways of life that will yield us the bounty that we really need to uncover in our lives. If I had not been led down the scenic highway of having been sexually abused, raised in a dysfunctional abusive family, and having been diagnosed with a personalty disorder I would not have even been on the car in search of the normal whose yield to me, though it fell short, was not only average mental health but also the revelation of Asperger’s Syndrome in my life.
Asperger’s Syndrome the one remaining piece of the puzzle of my life. The left over lost legacy of what it means to truly be who I am.
But even more so than that dream I had to be normal the despair and the grief had an entirely different layer to it. I have just recently and slowly uncovered this layer. I am still uncovering it and really I may always be in some stage of its further being uncovered. This layer has all to do with the painful experiences of my childhood and adolescence.
Experiences that were enriched through their ability to cause me pain, in retrospect, no doubt, because I have Asperger’s Syndrome and I had no way, then to know that, as I know it now.
I had not yet been formally introduced to my Asperger wall of pain or its unending burdens and blessings in my life. There it was, my Asperger wall, stone cold, thick, inpenetrable, my worst enemy and my best friend.
For years I had no reference point for the foundation of my difference or for this wall that I would slam into over and over again. A wall, my Asperger wall, that I still do slam into with predictable regularity.
It is my Asperger wall that holds the very sacred parameters of my ability or lack thereof to find my way in the social sphere of life. As I continue to push the limits of my own social impairment and social disconnectedness I continue to not only hit my Asperger wall, but I get to know a little better each and every time I hit it. I learn just a little bit more about the nature of the pain of being one way in the world, autistic, and of being constantly expected to be another way – neuro-typical. There are so many lessons that fall to the foot of my Asperger wall where I sit, from time to time, crying and still trying to make sense of it all.
My Asperger wall is a sacred and paradoxical reality. It is the lighthouse of my limitations and the harbinger of all my potential to continue to find compensatory coping strategies that little by little do in some ways broaden the horizons of even my social understanding along with my ever-deepening understanding of who I really am and how okay that really is.
© A.J. Mahari December 2, 2007 – All rights reserved.
A.J. Mahari is a Life Coach who, among other things, specializes in working with those with Asperger’s Syndrome and their partners, relatives, or friends. A.J. has 6 years experience as a
Life Coach and works with clients from all over the world.
[email_link]
How Should NT’s Treat Those With Asperger’s Syndrome?
How should neuro-typicals (NT) treat those with Asperger’s Syndrome (AS)? Whose responsibility is it to ensure that communication is constructive and/or clear? Is it all up to those who do not have Asperger’s Syndrome to make things somehow better in relating for those with Asperger’s?
Is it the responsibility of those who are Neuro-Typical (NT) to ensure that the person (or persons with AS) that they are relating to feel comfortable all the time? What are NT’s supposed to do? What NT’s shouldn’t have to do is take full responsibility for any and all relating communicating, or socializing with an adult with Asperger’s Syndrome.
I received several emails on this subject from NTs, that in many different ways were all asking, How should you treat people with Asperger’s Syndrome? What should we do?
Let me respond, firstly, by saying that how those with Asperger’s Syndrome should be treated is not necessarily so different from how each and every one of us would be best served to strive to treat each other generally.
The ways in which we all need to strive to treat each other include being kind, caring, compassionate, understanding, non-judgmental, with respect and dignity, and as inclusive as possible and so on.
With particular respect to those with Asperger’s Syndrome the first thing to consider is whether or not you are interacting with a child, teen, or adult. The way in which you interact with a child or a teen varies
greatly, generally, and this is true of those with AS also.
Of course, relating to an adult, then would differ somewhat (AS or NT) from the ways that we relate to children or teens. Adults, even with AS, have much more responsibility to be a part of the building of the
foundation from which interaction can take place between two adults, whether that’s one NT and the AS adult or two AS adults or what have you.
While there are definite and varied styles and degrees to which socializing, or relating is accepted, understood, or wanted by those with AS, it is important to keep in mind the individual strengths and weaknesses of the person you are wanting to relate to. This would be the case whether someone has AS or not.
While there is no doubt that in most, if not all cases, of adults with Asperger’s communication with others in a relational or social context can be stressful, difficult, and often time-consuming, I don’t believe that those who are NT should be expected to bend over backwards all the time to try to ensure the comfort level of the person with Asperger’s.
Each adult with Asperger’s has to find his or her own way to comfort within a relational context. This can be done. The degree to which each adult with Asperger’s will want to relate or how often or how intensely varies greatly.
Personally, I do know that those who get to know me or who are closest to me do have to learn about what Asperger’s is and what that means and then learn more specifically how Asperger’s manifests in my relating and communicating. I think that just as those of us with AS continue to try to learn more about what NTs want and need and why, the same is true of NTs needing to learn more about what those of us with Asperger’s (individually) need and want and how it is that we process information differently, the reality of social challenges, and the ways in which having Asperger’s does impact relating.
It is important for those with AS to learn how to open up and trust a friend or partner with the vulnerable places where he or she may need to explain more to an NT to be understood and/or ask for help or information about how to best give the NT what they need. I ask those that I relate to if I’m being understood and I listen to them when they give me feedback as to what they may need that I don’t know to give without being cued to do so. Being open to being cued and then doing
your AS best to give is also very important.
Ideally, compromise and openness to understanding how the individual person you are relating to with AS would feel most comfortable is a very welcome and kind thing to keep in mind. Just as those with AS, wherever and whenever possible need to continue to learn how to reach out to those who are NT and try to find some common ground from which to relate. This ensures that both parties have opportunities to be heard, understood, and feel included and respected.
There may well be some concessions that will help make relating to someone with Asperger’s more accessible than not realizing that some more give (at times – yes maybe often) may be necessary on the part of those who are NT. However, that said, I personally believe, as an adult with Asperger’s myself, that it is my responsibility to work at finding and balancing my own comfort level in interaction with others. I do not believe communication (especially in friendships and relationships) will be effective for everyone if only one person is making all the efforts at creating a comfortable interaction.
Often relating to those of us with AS will require more patience on the part of NT’s. It would be counterproductive to apply pressure or to have certain expectations as to how someone with AS will communicate or relate or socialize with you (NT’s).
While that kind of consideration and effort is kind, caring, and compassionate and has its importance for those with AS it is important that NT’s (and those with AS) realize that the NT is not wholly responsible for all things communication-wise and so forth. Bridges must be built and responsibility for interacting must be shared to whatever level of sharing those with AS can achieve. Some with AS will be much stronger at this sort of thing than others.
So, basically, being kind and understanding and accepting are very important. However, remembering that you are not responsible for any entire interaction/communication/socialization with an adult with AS and that treating them like the person that they are and with respect is the most important thing.
Sometimes, for many with AS, the more intense any relational or social experience is the more stress they may have and the more they will have to deal with their difficulties. This is, however, something that most just want to be accepted in spite of for who they are. Most with AS do not want to be treated in such a way that would see the NT denying their own needs and wants and comfort needs and so forth.
We come from different worlds in the relational/social spheres and it is important to be as inclusive as possible and as accepting as possible. Patience always helps too. Require as much reciprocity as the adult
with AS, in your life, is able to give.
Just as those with AS want to feel some comfort level in interacting with others (and this is often difficult and stressful) those who are NT need also to ensure that they can find a comfort zone when relating to someone with AS.
We are different, just as are all individuals different in general too. Each one of us as human beings requires that we be seen for who we are and accepted for who we are. This applies to those with AS and those who are NT. This is common ground upon which to build foundations of communication.
© Ms. A.J. Mahari May 22, 2005 – with additions February 6, 2009 – All rights reserved.
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