Showing posts with label late-diagnosed. Show all posts
Showing posts with label late-diagnosed. Show all posts

Friday, February 10, 2012

The DSM-V Changes From a Late-Diagnosed Adult's Perspective

Charli Devnet

Charli writes: In view of the firestorm surrounding the proposed changes to the DSM-V criteria for the diagnosis of autism spectrum disorder, an open debate on the nature and scope of autism and what it means to be autistic might be in order.


I’m not an expert, but I am autistic. All my life I searched for the answer to a seemingly inexplicable riddle, “Just what is wrong with me?”

At the age of 54, I was diagnosed with Asperger syndrome. The diagnosis, when I finally acquired one, was not a surprise, not to me nor to anyone who had known me for any significant time. I’m far from a borderline case. No one came up to me and said, “You? We just cannot believe it!” Instead, a number of people greeted my disclosure with the response, “We thought so all along.”

Not content to simply have found the key to unraveling the mysteries of my past, I became somewhat obsessive, as Aspies are prone to do, and raided the local libraries and bookstores for literature on autism and the autism spectrum, and I searched the internet for hours on end for all the knowledge I could absorb. Ironically, the more information I acquired, the more confused I became.

I thought I knew what autism was. Eugen Bleiler, a Swiss psychiatrist treating childhood schizophrenics, coined the term a century ago to refer to the tendency of his patients to withdraw from the world. “Autism” is derived from the Greek word meaning “self,” and therefore, it seemed to me, autism meant “self alone,” and denoted a person who lived in a universe of one. That made sense to me, because, most of my life, I had indeed been stranded in a world apart.

Perhaps I should have figured it out a long time ago. I had had no delays in verbal skills. That may be what threw me off. From the age of two, I was highly articulate and talked what my mother used to call “a blue streak” about my favorite subjects. I talked a bit funny, it is true, muttered and mumbled without proper enunciation, and tended to babble on even when no one was listening -- but I sure had a wide vocabulary. In all other areas of life, however, I was, and remain, profoundly autistic.

Even as a bright, bouncy tomboy in the 1960s, I had been called a misfit. I had not been considered disabled, but rather as a gifted child with behavioral problems. My teachers treated me rather harshly, believing that such an intellectually advanced child -- and a girl, at that -- should have known better than to throw tantrums and cause disruptions in class. Other kids mocked me for my poor motor skill coordination, my strange food aversions, and because, as I said, I did talk a little funny. Schoolyard bullies targeted me, for reasons that I could never quite grasp. Nevertheless, I did pretty well, all in all. I did have friends of my own. My grades in school were high even though class work often bored me. I pursued my special interests and, if my schoolmates harassed me, I could take comfort in a network of supportive aunts, uncles, and grandparents. Like most kids in the sixties, I was accorded a measure of freedom that is unknown to the children of today. When the bullies tormented me, I hopped on my bike and sped away. Eventually I learned to fight back.

Then it all changed. My parents sold our house in my hometown and moved up north, to a land where it was always winter, and the winter seeped into my soul. As a bitterly lonely teenager, I withdrew into an inner life of fantasy and imagination. As Tony Attwood has stated, this is a defensive mechanism resorted to by many aspiegirls to cope with an intolerable reality. As an adult, I tried my best to rejoin the world, but found that it was not so easy. Wherever I went, I was a stranger. I could not fit in no matter earnestly I tried. I was not just socially awkward; I was socially dysfunctional, a deficit which a high IQ and several college degrees could not offset. It appeared that I was permanently fated to be the outsider looking in like a child with her nose frozen against the windowpane or rapping upon a door which would never open. Yes, I could see that the term “autism” applied to me.

Yet, as I delved further into my research, I realized that the modern understanding of “autism” did not necessarily refer to a world on one’s self, but was more commonly used to describe a panoply of behaviors associated with autistic persons, such as sensory processing difficulties, repetitive motions, difficulties in social interaction, resistance to change, insistence upon routine, poor motor skills, deep but narrow interests and so forth.

By their fruits, you will know them. I suppose so, but the focus has shifted to all fruit and no tree. Because all attention was now concentrated on the outward manifestations of autism, the original meaning of the term had been forgotten. People self-identified as autistic, and, indeed, were professionally diagnosed with ASD that were not, in any sense, living in a universe of one. In fact, many of these persons now seen as on the spectrum would meet my criteria for “perfectly normal;” they have successful careers, loving marriages, families of their own, and a place in the community. As our understanding of the autism spectrum has evolved to include individuals who are far removed from the classical definition of autism, the inevitable backlash has arisen. Hence, there are suggestions of over-diagnosis, and the DSM-V Committee has proposed to redefine the guidelines for ASD in an apparently more restrictive manner.

Lost in the furor that has erupted and the allegations and recriminations flying back and forth, are the key questions that should be agreed upon before any revisions are made: Just what does it mean to be autistic? What are the limits to the autism spectrum? What essentially differentiates autistic persons from those who are not autistic? Is it merely a matter of behavior -- and if it is, autism can indeed be “cured,” for behaviors can change, or is there something inborn in autistic persons which is not present with neurotypicals and will persist even if their behaviors are modified?

I have not yet taken a position on the proposed changes to the DSM-V because I am still uncertain what the impact of the new criteria will be, or whether the benefits wrought by the changes will outweigh the detriments. Some have surmised that, under the new DSM-V, adults on the autistic spectrum who have grown up undiagnosed will not be able to obtain an ASD diagnosis later in life, as I did. If that is the case, the changes will do a great deal of harm. The relief and empowerment I felt when I was diagnosed and finally discovered what “was wrong with me” were overwhelming. The diagnosis came at a very low point in my life, soon after my parents and other family members had passed away, and I was immobilized by grief, depression, loneliness, and anxiety. It literally gave me a second life.

The diagnosis of Asperger syndrome also freed me from the burden of shame that I had carried on my shoulders for decades. When I was a child my mother had boasted to all her in-laws of my high intelligence and how I was so much superior to all my excruciatingly mediocre cousins. However, as the years unfolded, all the boring typical cousins went on to have respectable careers, marriages, homes, and families of their own while this little savant fell flat on her face. My early promise was forgotten and now when people looked at me they saw only my social ineptitude, strange behavior, inability to function as a mature independent adult and -- despite a lot of education -- my failure to eke out more than a subsistence living from a patchwork quilt of part-time jobs. Like many Aspies of my generation, I was blamed for my own miscues and seen as a lazy, slovenly, no-good bum and a bitter disappointment to those who had once believed in me. Diagnosis brought me the realization that it really was not “all my fault “as I had been led to believe, and enabled me to stop apologizing and regain a measure of pride. I would not want to sign onto anything which might deprive other autistic adults of the same gift of self-discovery that I was finally granted.

On the other hand, I find it perfectly logical to suppose that there is a measure of overdiagnosis going on, especially at the childhood level. I have worked in law offices where we represented Workers’ Compensation and Social Security Disability claimants. I am aware that many sympathetic physicians will exaggerate their patients’ impairments so that the applicant might qualify more easily for benefits. By the same token, it would not surprise me if schools were assessing borderline children as autistic so that they might receive services that they would otherwise not be entitled to. Something more sinister might be going on as well. Just as the makers of diet products have grown rich convincing virtually all of us that we need to lose weight, an industry has grown up around the “autism epidemic” which has a vested interested in keeping the numbers high. Imagine, if you will, that you held a high-paid position as a fundraiser for a non-profit dedicated to autism research. You would be more secure in your job if you could loudly trumpet to frightened parents and grandparents that one out of every ninety children will be diagnosed as autistic. One out of every 900? Not so secure. And if that number was understood to include not only sweet adorable tots, but fat balding fifty-year-olds? Not a chance.

I do not find the argument made by many on our side that access to programs and services might be restricted under the new criteria all that compelling. The allocation of resources is a political and economic argument, not scientific one. I am mystified by those who appear to believe that, the more expansive the autism spectrum is, the more people will have access to services. The opposite might well occur and access decrease for those on the more challenged end of the spectrum. We are not dealing with an infinite steam of resources, and the parents of non-speaking intensely autistic kids well resent their children having to share what services and programs are available with high functioning Aspies like me. If you have sought government assistance recently, either for yourself or for a charity, you know how difficult obtaining such help has become. Our government may spend untold sums on the newest weapons systems, on invading Middle Eastern countries, in baling out Wall Street, but for the poor, the disabled, the unemployed, the uninsured the pie is shrinking quickly. Before we increase the demand, we should be sure that the demand will be answered.

What bothers me most of all is this: the term “autism” is in danger of becoming so amorphous that it will lose all significance. Temple Grandin, the great autistic scientist, writes in her book “As I See It” about three types of autistic minds: the visual thinkers like herself, who can take things apart and put things together; pattern thinkers who are good at math and music; and verbal thinkers such as myself whose skill lies with words.

As a verbal thinker, I want words to mean something. Indeed, I do not feel safe around words that have no definite or discernible meaning. When I hear label “autistic” thrown around to denote various and sundry disorders, I cringe. The autism spectrum may well be wide and varied, but it should nevertheless have a distinct beginning and an end. Autism is not something that can be seen through a microscope or revealed in a sonogram, at least, not yet. Nevertheless, the diagnostic criteria cannot be totally subjective. I understand the motivations which lead well-intentioned persons in the community to say, “The more the merrier” and let us define the spectrum as broadly as possible, but that sentiment neither gives me comfort nor helps me to understand what it means to be autistic.

I have always known that in some fundamental way I am different from other people, and that this difference was not shared by many, but by very few. Not everyone has a “touch of autism.” If that were indeed the case, then the diagnosis would have no significance, and I might as well reclaim my childhood label of “misfit.” At least people were in agreement as to what that word meant.

Wednesday, June 30, 2010

What I Want People to Know

Corina Lynn Becker

In my time browsing the online community, I often get asked about my story, what it’s like to be a late-diagnosed autistic and what I want people to know. This is rather odd, because I’m not in the habit of showing off my scars, but there are some things that I think that I can talk about.

I want to be very honest with you. I am an adult living on social assistance, in a shared accommodation run by a non-profit housing organization. Despite being highly educated, I find it difficult to find and maintain a job on my own, and I’m not even sure that I ever will. I struggle to survive with few to no supports, mostly my family and the little that some organizations have been able to provide. It is, at times, very and extremely hard. There is a lot to remember, and each minute, each second, costs me. It costs me strength and energy, to maintain social skills, to remember how to do things, process information and formulate answers. It takes a lot of work, as I’m sure most parents of autistic people can understand.

I am an autistic adult who was diagnosed with Asperger Syndrome when I was 17, in 2002.  I wish I had known sooner, and that I knew as a child what I know now.

Maybe I wouldn’t have felt like a defective monster, or that I was too lazy and just needed to work harder for most of my life. Maybe it would have shielded me from the taunts of bullies, and helped to soothe the tears I cried into my pillow for nights on end. Maybe it would have helped me and the other children to better understand, so that maybe I wouldn’t be bearing the scars of social blunders. Maybe it would have mended my mother’s broken heart as she watched me desperately calling up every girl in my class, trying to get someone to play with me for a weekend a month away. Maybe my teachers wouldn’t have been so confused, and helped me more than the little ways they snuck into the classroom. Maybe I would have gotten better supports sooner, and would be more comfortable with accommodations, and more willing to ask for help when I’m in trouble. Maybe my parents would have understood me better, and would have been better prepared to help when I started coming home with meltdowns and severe panic attacks every day.

I could go on with all the "maybes" and "what ifs." But maybe just knowing, just having a diagnosis, would have made all the difference in my life. Or maybe it wouldn’t have. I can’t say for certain, the same way I cannot predict the future or outcome for any child, autistic or not.

What I do know is this; I do not want a single child to slip through the cracks and have to suffer being unsupported, through school and throughout life. I do not want them to suffer even a fraction of the damaged self-esteem, heart-broken pain, overwhelming confusion, exhaustion and self-loathing that I clawed through.

Once, I went to South Africa for a course, and met with anti-apartheid activists. To make a change, they told us, take up a cause that is personal. This is about as personal as I can get, that I share my experiences and advice from those experiences, so that others may learn. And so, I go out and try to find parents and caregivers who would welcome what I have to say, in order to make a change. Change, for a better future, not just for the next generation, and the present generation of autistic children, but for the entire autistic population including autistic adults.

I do not tell my story too often.  It is very painful to relive it, and I am thankful that I can focus on using my experiences to think of positive applications to my knowledge.

I want you to understand, that from my point of view, I did not suffer from autism.  That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. For me, the rising autism rates represents a rising rate in awareness and knowledge and a hope that less and less children will be mis-, under- and un-diagnosed, until there is no child that slips through the cracks. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.

To me, each child is a unique person with unique strengths, weaknesses and needs. This is all children, and all people. We all grow up with different cultural backgrounds, with different parents and experiences, and become unique people. At the same time, one autistic individual will require unique supports, just as she or he has unique abilities.

I may not be able to speak on the behalf of the entire autistic population in terms of my beliefs and experiences, but I do my best to apply what I know to each situation I come across on the internet, to see whether I can be of any assistance, even if it is just to provide encouragement. By doing so, I hope that my feedback can provide support to parents and caregivers, who in turn support my fellow autistics.

As I do this, I hope that people remember the following:
  • Have understanding. Sometimes just knowing that we are having a hard time is enough. Be aware of what affects each of us and understand that we try very hard with what we have, even when we have nothing left. Even if it does not lead to supports and accommodations, just knowing and giving us a little more room to work can make a big difference.
  • Have patience. A lot of us can take longer than others to develop and learn things.  But autism is a developmental disorder, not a delay.  So we do develop and grow, but we need your help, and you need to keep your cool.  It may take a saint’s level of patience, but we need someone stable that we can depend on, a steady hand to help guide us when life gets more confusing.
  • Be caring. More than anything, we are still your children and students. We are still people capable of feeling, of loving and being hurt. Make sure to not just be a service provider or educator. Be our friends, our family. Learn what we love, and use that to speak to us that you care. Learn how we can show you that we also care for you, and to look for how we communicate to you.
  • Be positive. This is really hard to do sometimes, with all the challenges that arise, but it’s very important. We tend to pick up our attitudes from those we’re around, either being over-sensitive or under-sensitive, and so your attitude becomes ours. With all the difficulties we face together, it’s very easy to be discouraged.  Do what you can to keep a positive perspective on things.
  • And finally, be good to yourself. You and I are only human. We aren’t perfect. It’s okay if you make mistakes. Forgive yourself, and take the time to take care of yourself. If you need to, seek respite and take a day off. We all need personal time to rest and recharge. So when you feel yourself worn thin, don’t be afraid to reach out for help and take a break.
I don’t believe I am alone when I say I don’t expect you to be superhuman. Raising children and taking care of others can be very hard, and sometimes it’s hard to find help. But there are people who can help, and we want to be there for you.

I hope that my words reach people and provide help in some way. While I strive to make big changes, I believe that all that I’ve gone through and all that I work for is worth it if I can make even just one small change.  Maybe that small change can make all the difference.