My daughter is “cured” of autism. She was identified as having PDD-NOS at the age of 2, and lost the label at the age of 5 after a tremendous amount of therapy and her verbal skills reached within age appropriate levels. She does not qualify for services or meet the established criteria anymore. She’s “cured”.
However, although her verbal abilities are within age-appropriate levels- which actually means about a year behind her peers-
- Her visual memory is approximately 2-3 years ahead of her age peers.
- Her ability to visually disciminate is 2-3 years ahead.
- Her mathematical skills are 2-3 years ahead.
- Her ability to decode and verbally read aloud are 2-3 years ahead.
- Her logic and problem-solving skills are 2-3 years ahead.
- Her social skills… are about a year behind age peers.
- Her ability to comprehend what she reads is about on grade level.
- Her processing speed for verbal information is about a year below.
- Her subtest scores on IQ tests look like a mountain range- high to low.
- Her overall IQ? Slightly higher than average.
- She has significant sensitivities to texture; and she fixates on subjects.
- Her interest in fashion? Completely typical
She is a classically “twice-exceptional” child- gifted in many areas, with a disabling condition in others- but not low enough or high enough to qualify for much of anything.
Does she have autism? Legally- no. But in our day-to-day living? Yes. She works around her autism with no educational support, although a Section 504 for social issues is being discussed. Does being “cured” mean that she’s now magically typical? Heck, no. We struggle with the same issues we did before she got “cured”- but they’re much less intense now. Taking away the label did not mean that the problems vanished. But the intervention then helped with the management of them now.
According to the New York Times, scientists are just about to dramatically reduce the recent “epidemic” and “cure” autism. No- there have been no magical interventions. No, there have been no sudden scientific breakthroughs. They’re going to define it out of existance. Because we all know that if you don’t label it, it doesn’t exist, right? Right?
The old definition required that a child exhibit characteristics in 6 of the 12 criteria in the areas of communication deficit, social deficits and repetitive behavior. The proposed new definition requires that a child exhibit at least 3 deficits in communication and social behavior and at least 2 in repetitive behaviors. 3+2=5. While 5 may appear more inclusive than 6, the issue is that the new definition requires that a child be more level in their areas of challenge. The distinctions between “Aspergers”, “PDD-NOS” and “autism” will become submerged into a high/low continuum. Some people fear that children who are less diffuse across the spectrum, but more intense in particular areas may be left out of the definition.
This, by the way, is similar to identifying gifted children and requiring them to be strong in everything. In the gifted education field, we have worked really hard to not leave out children who are really strong in one area, recognizing that few gifted children are that “level” in their abilities.
When we were Googling the issues associated with Elizabeth, we had the word “autism” to look up, to find out information. We had a label to use to explain her differences- and to seek remedies. We had information to read and we had understanding of her differences. Without that label, she would have been perceived as a difficult child, a spoiled child, a child who wouldn’t talk. I wonder how many parents will try to beat their child into submission because they perceive the behaviors as the child’s fault, as their fault. Without a label, behavior becomes very personal.
Because of her label, Elizabeth received therapy- lots of therapy. Daily speech and occupational therapy through the publically-funded Early Intervention services were provided, and I was able to research ideas and things to do at home. With no label, there are no services, and with no services, there is no determinant of growth. With no label, parents are dependent on dealing with symptoms, not understandings, and a child’s ability to receive help is dependent on a parent’s ability to pay for interventions of fuzzy problems, rather than a more cohesive set of services. Without a label, developing a child becomes even more dependent on socio-economic status.
One of the most critical issues is the issue of funding. With autism being “cured by definition”, there are no services and if there are no services, there is no funding With no funding, the progress that has been made in the causation and treatment of autism dwindles. There is still an awful lot we don’t know about autism. Ignorance is understandable- ignoring is not. Without a lot of labels, there is no reason to move research forward.
Elizabeth was fortunate. She was “cured” of autism- after intensive therapy, after intensive research. She had to get a label to learn how to live with her issues so that she could be “cured”.
I fear for the children who will be “cured” of autism by changing definitions- who will find that there is no help for their issues, and there is no cure at all.
I want to end with a call for action- but I’m not sure of the direction to go. Certainly, it is important in the development of autism as a field to have more and more cohesive understandings- for funding purposes, for research purposes, and for intervention purposes. If the label means nothing, then the research can find nothing. More recent studies are finding that the impact may be less than expected. However, it must be realized when examining a change in a definition that the problems faced by individuals with autism are real problems- and redefining them doesn’t remove them.
I love this different perspective. I’m typically “anti-label” and pro-service (e.g., give them what they need but don’t worry about labeling & stigmatizing them). This gives me something to think about. Thanks!
Comment by Wendy — January 21, 2012 @ 6:07 pm |
I know – there are lots of negatives- but some real positives as well…
Comment by profmother — January 23, 2012 @ 11:21 pm |
So insightful and important, thank you.
Comment by Michelle L'Esperance — January 21, 2012 @ 6:28 pm |
I have to tell you, this entire subject was so well-articulated I no longer feel I want to write about it! Thanks for sharing this, and for the subtle nuances of the “big picture” expressed here. So glad to have you back!
Comment by autismmommytherapist — January 23, 2012 @ 8:05 pm |
Oh- I hate it when I find that in other people’s blogs- when I feel like I have nothing to contribute. You DO- if only to add your voice to the Google searches on this subject. There are LOTS of views and perspectives- and the APA needs to hear that these decisions are going to affect real children and real parents who are trying to help their children.
Comment by profmother — January 23, 2012 @ 11:21 pm |
The thing I can relate to most is your comment how “Without a label behavior is personal”. Nothing felt better after my son got diagnosed with pdd-nos to be able to say that after the teacher’s aid told he got kicked again by my son that day. Our son is about to turn 5 and like your daughter, he is “high functioning”. High on some days and low on others.
It is hard to break through that layer that autism creates at times to find our son in there. He is the sweetest child in the world and passive while other times he is whirlwind of energy others. I am greatful for others that are speaking up to make our lives easier. This poor action to eliminate a label is horrible. I grew up disabled my self. Without my label I would never had received as good of treatment I did receive. I have hemophilia and you would not believe how many doctors, teachers and parents were ignorant and unhelpful. Thankfully I watched my parents fight for my needs and I in turn am willing to step up and do the same for my kids or anyone else. Thank you for blogging and sharing.
Comment by samuell price — January 24, 2012 @ 8:57 pm |
I’ve made comments elsewhere basically panning the effects of the impending DSM changes but you may have altered my thinking. I will think about it some more.
Meantime, sharing this:
http://thinkingautismguide.blogspot.com/2012/01/dsm-5-autism-criteria-clarifying-impact.html
And this:
http://susansenator.com/blog/2012/01/disability-it-really-is-okay/
Comment by Barbara — January 30, 2012 @ 9:56 pm |
I still say that labels are ok- it’s our use of them where it becomes problematic. A label makes things less personal…
Comment by profmother — February 6, 2012 @ 5:01 pm |
Oh my goodness, you have just tapped right into my main fear…that my daughter will be “cured”, just because her speech has improved dramatically, although still behind her peers, and her behaviours have lessened because she is able to communicate with me a little better, therefore removing certain frustrations…on the surface it does appear that she has reached a level of “normal”.
But I know different…I’m still dealing with the fears and anxiety, the over the top tantrums, the fixations with various things….the list goes on and on.
Some days I even question my sanity as she manages to appear “normal” to all around her…I’m sure they do.
I don’t understand why some people are anti label, we all carry labels of one kind or another, autism is not, in my mind, a bad label to have, but it is necessary to get support and understanding from the rest of the world, not just for the child but for the family who have to live with it too.
I sincerely hope that my beautiful gifted girl can keep her label, I want her to be treated with compassion and understanding as she grows up, and not the spoilt difficult child she will be labelled without her autism label.
Comment by Mel Salmon — February 2, 2012 @ 5:12 am |
Good luck! It’s so frustrating how hard “normal” can be to maintain, and then when we ask for help for them- we’re the onees who are exaggerating!
Comment by profmother — February 6, 2012 @ 5:00 pm |
Hi!
I just found your blog, and wow, I’m glad I did. As a 53 year old Twice Exceptional and parent of TE twins, I empathize with everything you stated here. I read an article, which I cannot now locate, some months back that 1 in 4 school children are being diagnosed as either Autistic or ADHD. This sounds like an epidemic, but I find that horribly unacceptable. What I see is a public educational system unable to deal with children as who they are, not what the school wants them to be. Further, the profession of psychology has not deviated from the AMA definitions of what the AMA likely has no clue about, Twice Exceptionalism. TE is a condition they say, but I say it is just a different shape to the human psyche that we have yet to understand. Your analysis of your daughter is exact, and right on the money with TE. My twins, who are now 23, tested on their ACT scores in the 99.9999 percentile in reading, writing, and comprehension, while in math and science, in the 28 percentile. We took them out of two failing years, freshman and sophomore, from public school (who wanted to put them in a school for challenged learners), and placed them in Denver Academy, a school who works the K-12 arena with gifted and TE students. In two years they finished four years of high school work, made honor roll every quarter, Deans list every year, and were inducted into the National Honor Society for academic achievement. Yet, post-secondary institutions fail to provide for their needs, fail to recognize the differences that TE brings to the classroom, and they, like I was at that age, are struggling through life. I first attended college at 17, after nine colleges and universities, I graduated with my BA in August 2010, and am carrying a 4.0 GPA in my Masters at the University of Denver. I plan to pursue my Ph.D. immediately in Cognitive or Educational (or both) psychology.
I think the thing I want most to share is encouragement to everyone that reads your post, and you yourself. You are not alone. TE is not a condition, it is a different way the cognitive functions work, and we need to stop trying to apply our subjective paradigms to an issue we have yet to objectively define. In deed, I believe the reason that so many professionals in education and psychology push back so hard on TE parents is, they are unprepared to meet the need, for the most part, because they don’t know how to. To do so would mean they have redefined what we think we know is called intelligence. Supposedly, I’ve been tested at 170, but I find that hard to digest. Yet, I remember when I was seven, I knew that the first thing I had to do everyday was to sit and think, what kind of day is it going to be, how do I feel this morning. What I would later find out was, I am Bi-Polar. After being on medications now for over seven years, I have found a life that I did not know existed, me. Yet, I do not prescribe to notions that children should be treated with meds except in obviously extreme cases. In this approach I see you did a wonderful job as a parent.
You are also not alone in questioning the misdiagnosis issues. Even in the world of Psychology, professionals are coming forward and stating that far too many children are being given wrong diagnosis, and I believe this is due to the linear thinking process that most of them use. I am proposing a new model of cognition, one that I have taken from Albert Einstein’s Quantum Physics. (As a side note, I still cannot perform above basic math, but I spent 25 successful years in IT with a base in advanced programming.) I am teaching myself physics, and as I do, I see how the intellect is not linear as most IQ tests would have us think, along a continuous line, categorizing an individual and compartmentalizing their capabilities, rather, that they are a unique individual that absolutist theories of intelligence cannot explain. The mind is a marvelous thing, it can heal itself, teach itself, and never stops growing or learning throughout our lives. Therefore, we as parents must never, ever, give up on our children. Indeed, empowering them is the way. I urge not to push them, rather, examine ourselves, our own speech to them, and how we spend our time with them towards better parenting of gifted and TE children.
In closing, please allow me to share this. My twins were in 4th grade when one night they wanted to watch the 4 hour non-commercial movie of Shakespeare’s MacBeth. The movie was english made I believe, and used the original speech that Shakespeare wrote in. I had concluded that within 30 minutes their attention span would lapse and they would be off to bed. Nope. At the end of the movie my sons turned to me with excitement and began engaging with plot and character intricacies that even I had not seen. I think as adults we loose what Einstein told us “never lose a holy curiosity”, that children still have this, no matter who they are or what issues they face, they are still marvelously curious. I read a book recently that I think every TE parent should, The Gifted Adult by Mary-Elaine Jacobsen. In this book, she lays out the differences between the bright child and the gifted child. The one I thought of reading your post was this, the bright child knows the answers, the gifted child asks the questions; the bright child answers the questions, the gifted child questions the answers. It has caused me to question if we in society of adulthood have so lost our ability to understand through the paradigm of a child’s mind, especially gifted ones, that the universe is not as we have defined, but something yet to be discovered. My last thought, take a moment, look up “famous people with learning disabilities”, then replace the word disabilities with challenges, ADHD, Autism, and varieties so you find the vast amount of websites where you can find the names of people with these conditions. It will astound you. Now, imagine, knowing that list, that the world had been denied their talents because we allowed society to label them and keep them under-educated. As long as parents like you continue to fight for your child, the world has hope that newer generations will see these TE individuals not as conditioned, but as uniquely gifted with potentials we have yet to understand.
Drop by my site if you like, http://7thm7.wordpress.com/ , or my (badly needing update) university website http://mysite.du.edu/~tmille47/Twice_Exceptional/Forward.html . As you can tell, this is a passion for me, not only do I want to teach at university on the gifted mind, but I want to create an NPO dedicated to helping children who matriculate into post-secondary education reach their potential. As long as I know there are children out there that are TE, I will never give up questioning society’s approach towards them, and seeking to assist them.
Thanks for your time, I hope somewhere in this book you find something of value.
Tim
Comment by 7thm7 — February 15, 2012 @ 12:24 pm |