Report of the DSM-V Neurodevelopmental Disorders Work Group

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Hi poppy fields,
I apologise for my preconceived views, I need to read a bit more and post my opinions a bit less.

To poppyfields:

I think I understand what your concerns are now.

Maybe I am more concerned with what you describe as "aspies getting away with stuff". My brother-in-law did not have a learning disability, but he did have a physical disability. He was given many concessions in school, and his overall behaviour (at school, at home, in public, etc) was not critiqued or controlled like his brother's was. I believe it resulted in his life becoming more difficult than it needed to be, and made it difficult for him to get a job. I think it made him feel like he shouldn't bother trying to do certain things because other people told him it would "be too hard for him".

Perhaps I am looking at it differently because I was lucky, in a way, because I believe my mother also has AS, and she was able to provide advice and insights to me when I was young to help me "deal" with social situations. She would try to help me figure out where I went wrong socially (although I think she was guessing a lot of the time, and relying on her own experiences of social awkwardness). Also, she was sure to keep the home calm and quiet (I imagine she wanted it that way too), and did not dismiss my complaints regarding sensory issues (namely, bits of fuzz in my socks that felt as big as rocks to me). But she was able to explain to me (and show me ways to deal with) the fact that other people would not be so accommodating; and so, I needed to find ways to cope outside of the home.

Did you have someone in your family who was able to provide those things for you as you were growing up?

I don't think it's always helpful to be stuck with a label. If I had been, perhaps people would have decided I wouldn't have been able to do certain things on my own (like go to university, or get a job, or live alone). And maybe instead of fighting through it all, I would have listened to them and not even bothered trying.

Upon further reflection, I think maybe I can narrow it down to this:

- I do not have unwavering faith in those who may be charged with helping someone labelled with AS
- I can not discount the potential negative impact a label may have in how others (friends, family, fellow students/workers, teachers, employers, etc) treat (or regard) someone labelled with AS

That is to say, being labelled with AS is, in and of itself, not anything positive or negative (it just "is"). The reaction of others to that label is my concern.

I think you put that quite well

I did a speech in class on my disapproval of the merging of Asperger's with Autism in the DSM-V, however nervous and inexperienced I was.

Totally agree, i'm the same age and well ill tell you in montreal here they had no idea of anything,
they sent me to speech therapy and held me back a bit .. they knew something was wrong but no one ever thought of the idea to send me to a professional. because of that , i stayed in regular school. it was tuff. but not knowing i had a "problem" kinda made me upset at my social short fallings. this pushed me every now and then to try and make friends . it was not an option in school.

i met a few people and really learnt alot about social skills. now i can go along with a convo and not do any thing wrong.
as for doing the right thing ,,, well thats another story lol
actually i have no problem what so ever expressing my self in a professorial atmosphere now. I know that the problem is strictly related to small talk. besides small talk my social abilities may be higher then some.

granted small talk seems to be the most important part.

but if i do meet some one i can often manage to get by well

I'm very interested in the idea of enfolding ADHD within the spectrum. How exactly would this move be represented? Would ADHD-PI be a unique diagnosis, with ADHD dissolving into the spectrum as the very top of the high-functioning end?

Based on my personal/familial experience I believe this would actually make a great deal of sense. My AS symptoms were long mistaken for an extreme case of ADHD. This may be a great way to minimize the amount of individuals misdiagnosed ADHD as well as those seeking a diagnosis in order to obtain stimulants. Of course this could be a slippery slope, resulting in any and everyone desiring a crutch being "autistic."

I have read this thread and many insights on ASD conditions have been shared in openness.

I would like to say a few things supporting diagnosis.

My school life was not supportive in primary school as I was labeled slow and I repeated a year because of that label. In my all boys High school I was labeled a "smart ass" and was punished often with a cane, in this regard. [This is no longer allowed, fingers crossed]


I have pandantic speech and speak in an overly formal manner. This got me into trouble, in both class and on the playground. I often hid in the Libruary. I had learning difficulties in spelling, reading and writing. I was an overly bright child in class, happily speaking about subjects, although I often said to much and was shut down or asked to leave. I would fail tests due to anxiety, spelling, reading, and writing.

I had high levels of stress and left school at 15 years old without my school certificate becuase I could not take the mistreatment any longer. I suffered both depression and social anxiety in my teens and into my adult life without seeking treatment, as I was convinced society was both backward and selective. My two son's also have not enjoyed the schoolng system and I do not wish others to have to go through this.

When I was 30 years old I started a BA. Comm. degree and now at 47 I have a MA. I did not present myself for diagnosis until after my son was diagnosed in 2008.

I included my diagnosis withn the subject of my Master's degree, my dissertation was, Memory and Cognative details. Asperger's, the art of communication and a personal journey.

My youngest son was diagnosed, with ADHD first, then several years later he attracted the diagnosis of PDD NOS, then later this was clarified as Severe Asperger's. This was a process of six years of consultation with specialists and the cost was high in both his ability to receive services for his needs and in terms of money spent on consultation.

By the time he was diagosed he was fed up with schooling and it's inability to embrace his condition.

We have all now learnt much about our Asperger's. Beng able to live in a NT world is important, as is knowing clearly what is going on- often clarfied by diagnosis.
In light of the trouble we have experienced as a family, I am in active support in developing new pathways for diagnosis to take place. Without knowing a causation for our difficulties we are susceptable to developing a sense of worthlessness, in that we are not skillful nor intelligent. This is such a shame and much depression and anxiety will follow.

Education about our condition and a changed attitude of mind is afforded by diagnosis.

I only completed my studies through the sheer drive of my interest overcoming my learning difficulties as I progressed. This does not mean I am now not Asperger's. I respect my neuro-difference and the difference of other's. I have been aware for many years that I get the details before I see the gestalt.

I thought for a long tme that this was just me and then I realised my sons do the same. Caught in the detail as a cognative process.

Detail has a wonderful attraction, it is beautful to see one rain drop merge with a pool of water in one nature.

Sorry for the long post, and thank you for reading it.

All our best to you!

Ps. I think many people with ASD's and theIr families will have similar experiences.

PDD-NOS is what I call a junk category. That is, they can't figure out what to call it so they call it that. Years ago when the panel opened up to input, I sent them a detailed note as a religious minister who counsels that PDD-NOS is a junk category and needs to be on the spectrum as does Aspergers. I was and am of the opinion that AS and HFA aree both HFA but with variable manifestation just like everyone on the spectrum is different. If we look at all of this as a line such as {____________________} with everyone on that spectrum somewhere in there with variant manifestations, we all get included in the spectrum rather than leaving out.

I also mentioned that Rett's should not be in there at all.

PDD-NOS is, as defined by the psych who diagnosed me, a combination. There are symptoms of both Classic and Aspergers but not enough in either one to put in one or the other exclusively. Some would say that Aspergers is not autism and that PDD-NOS is not autism. Well, here is a surprise: As a child I was a textbook case of Aspergers. Later after having been abused and beaten down, I turned to faking it and wearing Aspergers masks when I dared to interact, but was becoming more and more withdrawn and behaviorally problematic.

I went downhill due to the abuse and ended up with more Classic symptoms due to the abuse. Also, no matter how great my vocabulary and grades, eventually at age 15 the social pressures combined with abuse at home and information overload form many subjects dragged me down and I could not cope. I ended up going to business college as an adult with a grade 9 education.

My current IQ score is unknown because they word the problems in such a way that is confusing, making words sound too much alike. Problem example may be "If there are so many quibblies and so many tibblies" or whatever. I shut down instead of working it out. It is set up to shut down people with autism IMO. Last score was 136 even with terrible scores thanks to wording.

I am a consciousness theorist. My favorite system is the mind and conscious control of use of parts or aspects of the brain. I am able, for examples, to access and utilize the reptilian aspect of my brain at will as well as to go into trance states and do physical tasks most able bodied people would find difficult or impossible (I am physically challenged) or use creative visualization to get into my subconscious and regress myself while awake with no aid. etc. So, diagnosing myself with Aspergers after years of trying to figure out what doctors could not, I went to a child psychiatrist while wearing no Aspie masks at age 40. He diagnosed me with PDD-NOS.

{a part is now EDITED OUT- Copyrighted for my book}

I am like an idiot and a genius simultaneously. I have the high IQ but with sensory issues and what Donna Williams calls "meaning-deafness", poor social interaction unless using masks or not using eye contact, tags still bother me as do loud high pitch sounds and voices, Scotopic problems (Irlen Syndrome), "eccentric' interests and the list goes on added to so many other co-morbid things that are typical.

Even while not diagnosed I was working on myself because I knew something was wrong when I was not like other people and had such difficulty as well as faking it well enough that most people did not suspect anything unless they knew me very well and had very high IQs. (Now my closest friends are scientists.) I either faked it or went on not having any interactions, poor interactions to the point of staring into space part way through, or getting beat up at school or at home.

Am I healed? Far from it. However, most things I do not express in the presence of people. On the AQ I am at 35 and the EQ 65. I am barely functioning in the world regardless of my IQ, all the healing, all the coping.. still on the spectrum. Also, it is a myth that IQ cannot be increased. Mine went from 80 to 136. I have no meltdown coping skills as they come on seemingly suddenly due to tuning out and forcing myself to just get through what I have to. I don't get violent. I start to cry or suddenly feel lost in a familiar place. I panic and run. I have advanced meditation technique and physical martial arts training and still can not deal with a meltdown thanks to my father's abuse and what remains of PTSD symptoms in me..

There are no programs here for adults and after several wrong diagnoses and drugs from so-called doctors, I will not go to a shrink for so-called help. I learned the hard way that they all have biases, they don't know everything, it is purely theoretical and up to opinion, some have huge egos and others write down in their notes what they want to hear let alone what we might use from out of our conversation toolboxes. One shrink, for example, I told that my father beat up my older brothers and I felt helpless as I was unable to do anything to help them. She wrote down that although I beat up my brothers I claimed to feel helpless.

Assumptions are made by NTs, by doctors who should know more than they do, by parents who do not live it from the inside no matter how close, and even from people on the spectrum. I am an example of someone that no one can make assumptions about. The panel also have to remove Gender Identity Disorder and any stating that if someone is one the spectrum to not diagnose as trans. I am trans. I was born female and am now legally male... oh and I am pretty gay too- just to complicate matters further- something that used to be in the DSM.

We search for help from professionals but most of them don't know what they are talking about. We- the very people who are supposedly so deficient in living- must be the ones to wake them up.

Last edited by Damion on 29 Sep 2011, 7:10 pm, edited 1 time in total.

[quote="cyberdad"]I have to agree with cave-canem

I see no value in labelling our children other than trying to please the nuerotypes. There seems to be excessive pontificating on this thread about where individuals will be diagnosed on the DSM V criteria? Who cares....
quote]

I think we may have to agree to disagree on the context of the word 'label' cyberdad. I hate the word label and prefer SIGN - Also I prefer my own ADHD label than 'naughty' 'disruptive' 'delinquent' 'ret*d' or anything else people have a mind to label me. Would we choose not to label a 'blind' child and watch them drop off a cliff all because we didn't want to label them 'blind'?

I care very much and without my 'label' I would not have my identity. But that's my opinion and I am aware that not all will agree. Having had 5 disruptive, chaotic, dysfunctional, bad, naughty and poorly behaved children I welcome their diagnosis which comes with the explanation as to who they are and how they cope with life.

And I am very concerned at some of the ammended changes due to take place if all goes to plan in DSMV

As a teacher with AS I've had several students who appear to have AS themselves. It would make a huge difference to my ability to communicate with them, and therefor to teach them, if the parents had told me in the first instance that the child had a particular learning style.

I like the word Sign rather than Label. As Sign may be more relational to a given phenotype.

Also I can see how being a Teacher/Instructor it would be helpful to go forward in a meaningful way.

I think the main issue for us is how we personally identify, and that is a natural freedom.

When we hear that our identity may be changed by others it can raise both feelings and questions.

If we look at the multiple genetic causation of either Asperger's or Classic Autism, it seems that both groups may share some mutations in common or that mutations effect similar systems in the brain, but also that each group has unique mutations. These mutations may lead to social difficulty but also deliver new pathways of development.

Autism is quite appropriate, but but I do not think we can just say the spectrum is the same in a matter of degrees, as we may rightfully be talking about unique presentations, which share common themes.

Just a few thoughts!

I have read a number of the various posts and I am not exactly clear what the End-Game is of the DSM-V. Is it just to diagnose or is it to treat / provide adaptive techniques and direction?

We have a different neurophysiological mapping of connections of the neurons in our brains with a completely different cognitive processing and response mechanism than NTs. We may not all agree but lets make an assumption that is the case. So what is the End-Game? Is it to adapt and succeed in NT culture and society? Is it to function happily without being disruptive or damaging to ourselves and others?

I see lots of methods and metrics but not really a purpose other than people needing further access to resources, support, help, etc. While I don't minimize the need, what I am asking is what will these resources and definitions help us accomplish and how will the DSM-V help all of us get to that place? I think that if we define what we are looking for, and if we can set the tone and definition of the discussion (i.e what is a "cure" vs. "cope", what we need and what will get us that access, and how we want to be perceived) then I think our voice will be stronger than the Autism Speaks crowd or even the Psychiatric and Psychological communities. After-all, in 1973 in the DSM-III homosexuality was dropped as a psychosexual disorder, a form of mental illness. The DSM is not a god, and it is not stone. So what are we really looking to accomplish and why?

sensible post. There is power in standing together, so what are people looking for from diagnosis. From a personal perspective, it immediately answered questions I had about myself and I was then able to start working with my stregnths in order to compensate for my difficulties. I found a sense of not being totally alone in the way I think and experience the world, so I was able to start developing a personal identity whereas before, I tried to hide the type of person I am. I was able to talk about the way I experience the world and gained some acceptance from some people and continued hostility from others. I note that there is more and more acceptance, so if all the label does is to ratify our existence, for me that is a really good start.

Sounds good, as that was my experience as well.

Personally I am not looking for a "cure". I have no belief in one, nor do I have an interest in one. What I look for is a balanced understanding of strengths and points of polish (opportunities, weaknesses, etc.) as well as resources and technique made available for me to use to build on both those areas. Once I was diagnosed, I had a set of working parameters, much like technical or business requirements for software development or a set of engineering specifications I could work off of. It didn't tell me what the final result would be, i.e. who I would definitively become. However it did define what I had to work with, and so long as I could be creative, focused, disciplined and willing to get a bit uncomfortable I could accomplish quite a bit.

Most NTs don't know I am an Aspie. They know I am odd, but as I tested as gifted they write it off as being quirky. Who am I to correct them, so long as I am comfortable in my own skin? So to your point, I absolutely agree: Know thyself.

Next step: is this a wide spread experience and understanding, and if so, how do we communicate it to NTs who may process on the basis of stereotypes or misinformation?

It's best to keep it in. Think about how many undiagnosed adults would react at the thought of being told that they have Autism. A good portion of those would just think the psychologist is a quack. Someone with Aspergers is thought of as someone who is odd, nerdy, but a genius, or just socially awkward. Autism is thought being on the same level as being mentally ret*d. I wouldn't even qualify for an ASD diagnosis under dsm5, I barely do under Aspergers as it is.