Thursday, November 03, 2005

ADHD - the big debate



I've spent the past 3 years of my life studying ADHD - more specifically, I study how family factors impact on children and parents' attitudes to medication - particularly around issues of stigma associated with taking medication. ADHD is a real hot potato at the moment. Some don't believe in it, some are adamant that it is a neurochemical disorder and therefore can only be treated by neurochemical means. Others say it is a social construction, designed to oppress masculinity.

Recently I have been feeling frustrated...Let me re-phrase, at times I have been feeling downright angry at my own situation as a psychologist in an increasingly medical-model dominated (did I say dominated, I mean monopolised) research group. My skepticism has been growing at an exponential rate. So I thought I would record my random thoughts on my blog and invite my blog readers - informed or not, to comment. I know there are some people with ADHD who read my blog, at least one other psychologist and goodness knows who else. So please...Feel free to contribute.



I will talk about genetic and neurochemical approaches to ADHD and their limitations. I will talk about the implications of research funding for the kind of research we do and how we interpret it. I will take about the critical voices and how perhaps they aren't quite so critical afterall. I will talk about a need for genuine reflection on the social and cultural aspects of ADHD and ask if there are other ways of responding outside the medical model. And as this is my blog, not an academic paper, I will intersperse it with little cartoons for amusement value...enjoy!



Ok, so. Firstly there is some evidence for a genetic basis but equal evidence that genetics are far from being the whole story. Whatever the genetic component of ADHD, it is entangled with other environmental and social factors and this should never be forgotten in genetic research.

Secondly there is evidence of neurobiological correlates to ADHD symptoms. These shouldn't be ignored, but in themselves I don't think they legitimise drug therapy.

Thirdly, medication (e.g. ritalin) does have a beneficial impact on children who have been diagnosed with ADHD. We know this both from clinical trials and from the experience of countless parents and children. HOWEVER, the is a real issue of publishing bias. Almost every researcher in this field (myself included) is funded, at least in part, by pharmaceutical companies. Basically no drug company money, no jobs.

Whether we are aware of it or not, the fact that most research and most researchers are dependent on financial contributions from the pharmaceutical industry effects what we publish, what we research, how we research it and how we interpret it. I've yet to hear a drug-company funded researcher really give an open and critical reflection on these issues. More to the point, I do not feel comfortable bringing up these ideas within my research group as I know they would not be welcome. They would be deemed wacko and far too political. I think, that says it all really. My PhD research has not encouraged me to think critically around these so vital issues.



There are people who write very critically about ADHD and drug treatment. However, most papers in this field are highly emotive and fail to seriously engage with issues of genetics, neurochemistry and research highlighting the potential benefits of medication. I suspect the motivation behind most of the opposition is a philosophical objection to psychtrophic medication rather than a pure concern for child welfare. Let me be frank, the critical psychologists aren't helping themselves be heard, and IMHO, their over-emotive and scientifically inaccurate ranting represent a serious barrier to intelligent dialogue and discussion.



Nevertheless, I think many of them have points that are worth listening to. As a disorder, ADHD is shockingly ill-defined and it is really more of an umbrella term for a set of behaviours and cognitive symptoms that are currently socially devalued. ADHD is culturally defined and constructed - lets never forget this. ADHD symptoms are problematic in a social context. The history of psychiatry should humble (or maybe even humiliate) us into a bit self-critical reflection every now and again! It wasn't that long ago we thought gayness was a psychiatric disease and transsexuality is still in the diagnositic handbook! (That's a whole other discussion - but I think it ought to be removed - sharpish!)



It is possible that the social disapproval and resulting stigma and systematic exclusion of children who have ADHD symptoms may cause more distress than the ADHD symptoms themselves per se. Therefore the social-constructionists amongst us really do have an important contribution to make, and I think we do need to think on a systemic and community level regarding ADHD. Are the demands we put on our children reasonable? Do we allow our children space to be themselves (whatever that means)?
Do we utilise our children's natural abilities and aptitudes in order to maximise their enjoyment and development? Personally, I'm very interested in interactive and kinetic teaching methods and how these might help a lot of children learn in a more dynamic way that suits their temperament and fosters their unique talents.



In discussions with psychologists, social workers and teachers, I have often encountered an incredibly negative reaction to medication for ADHD. Again, I suspect this is an emotional, philosophical reaction. Parents are often blamed and medication is seen as an easy option. However, I think parent-blaming is unacceptable and the vast majority of parents I know, think long and hard and really battle with themselves before accepting medication for themselves. Often it is used as a last resort (which may not be particularly helpful or wise.)



At the moment, there was very little evidence as to the effectiveness of psychosocial interventions for ADHD. BUT, success in psychosocial intervention trials is often measured in medical model terms, focusing on symptom reduction. Psychosocial intervention needs to be tailed to the individual, familial, social and cultural situations of each child & family (and school for that matter). Therefore, randomised controlled trials may not be the ideal methodology for research in psychosocial intervention, and measuring success in medical model terms is outright ridiculous as our aim is often to reduce the distress associated with ADHD symptoms rather than "curing" the symptoms themselves.



With regard to medication, I do think there is a need for serious reflection and discussion on the social and psychological impact of taking psychotrophic medication in childhood (and in adulthood - and for any kind of mental disorder). Personally, I am convinced that taking medication has psychological and social repercussions for the individual and for society quite separate from the pharmacological effect of the medication itself. (Is this hard to explain, because I once attempted to have this conversation with my supervisor and he acted like I was suggesting leprechauns were real?). What does taking medication for behaviour mean to a child? To a parent? To a teacher? To a peer group? How does it impact on a child's sense of self? Does is lead to stigma? These are very real issues not only for people who take medication or whose children take medication - these are issues for all of us and how we all think about our own behaviours and our own interaction within society and response to those individuals who find themselves diagnosed with a mental illness or taking psychotropic drugs.



Finally - where is the ADHD advocacy movement? In autism there is a growing movement seeking to value neurodiversity. I recently read an article written by an autistic man who insisted he wasn't a man with autism (the current language in vogue amongst the politically correct) but an autistic man. His autism was a part of his identity and he was proud of it. That's challenging to me as a psychologist about to take a job where some of my clients will have autism.



But what are the unique skills and attributes of children and adults who could be diagnosed with ADHD. How can these be valued and encouraged within our society? Many adults and older teenagers I have met with ADHD say they would never want to be "cured" - but where are their voices, and will researchers, psychiatrists, psychologists, teachers and parents be brave enough to listen?

23 comments:

Paul said...

I appreciate your comments. I was diagnosed with ADHD by a teacher, but testing showed I was fine, but bored in school because they were moving too slow. Now, I have a number of friends, who as adults are being diagnosed with ADHD. Tey don't want to take any medicine because it "takes their edge off".

I am a big proponent of behavior modification.

Sarah said...

Ooh, I might pass a link to this onto my roommate. He has ADD (I think it's just ADD, not ADHD), never been medicated. He likes it. I couldn't explain it the way he can, but he says it lets him multitask in ways other people can't, which works to his advantage in the work he wants to do.

My sister was also 'diagnosed' by a teacher as having ADD. Really her high school and particularly that teacher's class was just as boring as all hell. I mentioned this to someone, and she said, "That's the problem you have when you're ADD- you can't concentrate when something's boring." GAH! If that's our working definition (I doubt it) or even a common public perception (apparently so) we're in trouble.

Martin said...

Is this your entire PhD, or just part of it? :-p

Contemplative Activist said...

Martin - this doesn't go in my PhD - it will most likely be assessed by a psychiatrist and therefore wouldn't pass because it lacks a p-value :(.

No, I will wait until I have my PhD and then write a damning critique of the whole field once I'm safely on my way to a clinical career ;)

Sarah - hi! Welcome. Please do pass this on to your roommate. I'd love to hear what he makes of it and his thoughts about likeing his ADD! Most people like the hyperactive part. Indeed I think Lorcan once said ADD is like cinema without the popcorn! ;)


Nice to know people are interested in these issues!

Martin said...

I realised, I was just poking fun at the length of the post! (Not that I'm not prone to the odd Tolstoy-esque epic myself)

Contemplative Activist said...

Meh - this is the culmination of 3 years of thinking - you expect me to whittle it down to 100 words?!?!?!

Besides, I did include pictures so be grateful for small mercies ;)

Lorcan said...

More later... just got in from a long drive... must unwind and get some sleep (sound of chuckling from all who know me well... five minutes of snoreing, followed to two hours of tossing and turning, three hours of reading an hour of writing to my friends and those who put up with me, and then five more minutes of sleep...
Well, Look kiddo, you saw me at the worst moments of me life... some said I needed meds, and it would have been eaiser for a number of folks around me, but I think I would not have learned as much as I did by crashing and burning and discovering my darknesses... and oh... I don't know... I worry that as I went to offer me self as a test bunny for ADHD treatments, ( wont do any treatments with drugs... ) the fellows who believe in drug treatment keep talking about cure... well, frankly, I am finding huge numbers of folks I respect are who they are, succsessfully themselves as people with ADHD... and those who define normality, well, don't impress me all that very much. BUT, I don't rule out meds, another long story when I have pretended to sleep for a little bit...
But hey... if we "cure" ADHD, where will all the sprinters come from, who the hell wants an olympics with only distance runners.
Hey Kit, and Darrell - remembering the days we burned up the track as the fast three sprinters for Grance Church School... frankly I think all those "normal" runners were jealous of we gallent nurotics... who were also the front line in soccer... cure ADHD... hell, who'd score goals in football?
Zippily thyne
lor

Amanda said...

I just finally got an official diagnosis of ADHD, inattentive last week. I was suprised to have them say that it sounds like I actually have some hyperactivity. I was a quiet kid, not the bouncing off the walls type, but an inveterate fidget. (still am. I shred any bit of paper that in unfortunate enough to fall into my hands. I abuse paperclips, and I reduce toothpickts to tiny piles of sawdust.) This is how my type was described in the literature they gave me:

These are the daydreamers who spend much time with their heads in the clouds or in a brain fog. They are disorganized.

This type shuts down when too many demands are made on their ability to listen, focus, concentrate and learn. This type has trouble listening and registering the content when others talk to them. When tasks become too difficult, they simply blank out and the harder this type tries to concentrate, the worse the “shut-down” becomes. This type can miss large gaps in learning.


Which is abolutely true. It's the shut-down that I dread and can't seem to control. Like they say, the harder I try, the more my brain receeds from my grasp. This is hell on the self-esteem, when everyone's telling you that if you only applied yourself, you'd be a genius and capable of anything. So you apply yourself, and you still end up a f*ck-up, and it all seems pretty black. I never learned beyond 6 grade maths, in spite of being kept home from all manner of parties and treats and trips because I couldn't finish my math worksheet, and I've lost a couple of jobs to this, and I think it contributed in large part to my depression. It has gotten to the point where sometimes I just can't function.

Of course the question that you raise is good...can I not fuction period, or can I not fucntion the way society wants me to? I'm glad there are peole like you asking these questions, because we need you. As an ADHD person, for now I do have to find a way to function in a societally acceptable way to some extent. I need to pay rent, and my bills, etc etc etc.

Hence the new script for Ritalin that I've got in my pocketbook. We'll see how it goes...

Theres a part of me that hates dumping pills down my gullet so that I will stop being "different". I don't want my personality to be "cured". I like it, even if it makes me annoying to some people. But I do want that awful blank-out, that panic of "Oh god, what am I going to get slammed for forgetting/failing to do next" to be cured.

Contemplative Activist said...

Amanda,

Good luck with the ritalin!

I don't think ritalin actually changes people's personalities. If you can use it in a way that is empowering to you and that helps you fufil your personal ambitions - then I think that's a medication well used. Arguably, its no different from me popping paracetamol on the days when the joys of PMT mean I can't string a sentence together, much less do my job, have a proper rest or go out with my friends. No-one suggests I'm rejecting my feminity to do so.

I think the personal and social meanings around medication use are really key. To take a rather different example, I know people who are uncomfortable to take the contraceptive pill because they feel it is unnatural to mess with your natural cycle. Others, I know see it as the end of their PMT and others hail it as the dawn of women's liberation!

I think the meaning a medication has to an individual within their particular social & cultual context determines the psychological impact of taking that medication on the person and their relationships with the people and society around them.

CA

Heather said...

I think that maybe kids are not as active these days, they don't exhaust themselves physically in a way that they used to do, and maybe that is one factor that contributes to hyperactivity. As for the benefits of ADHD, I find my manic periods are usually highly productive, but then the low that results is destructive. Similarly we need to learn to manage the way our minds and bodies work in a way that embraces these symptoms rather than medicate them. Am I right in assuming that ADHD medication is essentially a sedative, rather than actually changing the chemical make up to prevent such symptoms?

I did hear an interview with Daniel Bedingfield who credited his prolific work to his diagnosed ADHD.

Contemplative Activist said...

Hi Heather,

"Am I right in assuming that ADHD medication is essentially a sedative, rather than actually changing the chemical make up to prevent such symptoms?"

No, you're quite mistaken ;). Most ADHD medications (all but one) are stimulants. Stimulants increase the person's ability to concentrate - a bit like drinking a strong cup of coffee when you're sleepy in the morning. Actually, I know some adults with ADHD who self-medicate on caffeine.

I'm not convinced that ADHD is related to decreases in physical activity. I think kids with ADHD who are hyperactive are often very happy with running around - indeed, many of them are very active - but it doesn't make them any less inattentive or hyper.

Daniel Bedingfield? How interesting! I hope we get more celebrities who "come out" as having ADHD. When kids get diagnosed with dyslexia they're often given a big list of celebrities who have dyslexia to reduce stigma and make them see that having dyslexia won't stop you from being successful.

CA

Bonnie Ventura said...

You wrote: "where is the ADHD advocacy movement? In autism there is a growing movement seeking to value neurodiversity."

This is a very good question! I agree with you that both are neurodiversity issues. The reason there is so much more autism advocacy, I believe, is because society doesn't attach as much stigma to being hyper. Many people see Ritalin as not much different from drinking coffee to improve one's ability to focus.

The autistic population, on the other hand, must constantly struggle against negative images and extreme prejudice. Employment discrimination is rampant, abusive institutions still exist, and many autistic children are segregated in the schools and treated as if they are incapable of ever becoming productive members of society.

"Autism awareness" campaigns routinely assert that the existence of autistic people is a tragic catastrophe and that we must be eradicated. The United States government is currently funding the development of a prenatal test for autism. (See my anti-eugenics page at http://www.ventura33.com/clock for more on this.) Political advocacy has become, literally, a matter of life or death for the autistic population.

Until recently, I didn't know that I was autistic (my parents chose not to tell me because the stigma was so extreme), and I assumed that I was hyper. Although I didn't care for the use of terms such as "deficit" and "disorder" to describe a neurological minority group, I wasn't motivated to get involved in political advocacy because I saw such language as a minor annoyance.

I know better now...

Contemplative Activist said...

Bonnie,

Thank you for your comments!

ADHD as a term rolls so easily off my tongue. Its part and parcel of my daily work. However, thanks to your challenging comments, I'm now going to have to find alternative language!!! Any ideas? Bearing in mind that many kids who are diagnosed with ADHD aren't hyper, but are more inattentive??

CA

Bonnie Ventura said...

Finding value-neutral language is definitely a challenge! I have a daughter who would probably fit the inattentive category, and I would describe her as "easily distracted." She often repeats things she has already said because she can't keep track of whether she actually said it or just thought about it.

I wasn't intending to pick on your use of language when I posted my previous comment, but reframing negative diagnostic labels in nonjudgmental terms is a major part of what the neurodiversity movement is about.

Autistic activists often write about autism spectrum "conditions" instead of "disorders." Person-first language is generally avoided because of its negative connotations (it implies the presence of an unfortunate affliction). We also use words such as "characteristics" or "traits," rather than "symptoms" or "problems."

Kathleen Seidel has a very good collection of links, from sites representing various points of view, in the language awareness section of neurodiversity.com -- you may want to take a look at them, if you haven't already.

Contemplative Activist said...

Hi Bonnie,

Thank you again for your comments. I'm very interested in language and how we use it to describe people.

I am glad that you mentioned person-first language as I just had a heated discussion with a fellow psychologist as to whether to call deaf people 'deaf people' or 'people with hearing impairments'. I opted for the former!

I'll check out Kathleen Seidel's links. Thanks for the recommendation!

CA

Liz Opp said...

This is somewhat off-topic, about how to refer to people who have a trait, characteristic, behavior, etc. that somehow is different from the "average" person.

The examples I've read among all these comments include--
• an autistic man vs. a man with autism
• an ADHD person (child) vs. a child who has ADHD
• a d/Deaf person vs. a person with a hearing impairment.

It's the last example that spurred me to comment, since I used to work with people who are d/Deaf and hard of hearing.

I say: Ask the person directly how she or he identifies or how she or he would like to talk about the trait itself. This has been the only way for me to respect the individual and acknowledge the variety of ways to refer to the trait or characteristic.

In the case of d/Deaf and hard of hearing people, I found very few folks who insisted on being called "hearing impaired," and even these adults seemed easy with participating in a group for d/Deaf and hard of hearing people.

Another example I can think of: Friends for Lesbian, Gay, Bisexual, Transgender, and Queer Concerns, or FLGBTQC. Even though this is a more inclusive name for a Friends' group, there remain Friends who don't identify with ANY of these terms.

And here's a more personal example: When I was working with a therapist a number of years ago, at a time when I was having panic attacks, I wanted to find language to describe what I was going through without being put in a diagnostic box.

My therapist and I worked on finding language that felt respectful of me, that affirmed my experience as a person, and that gave us something to work with. He and I began to talk about those times "when my energy would get really high, seemingly out of nowhere, and I couldn't calm myself down."

It was after finding that sort of language, validating that I am more than those incidents and more than a label, that I became comfortable in saying to people a few years later, "I used to experience panic attacks." But the use of that phrase was left up to me, not a doctor or the majority culture or a psychiatrist.

Thanks for the questions you raise and the info you offer about ADD and ADHD, though. Especially the part about how so much research is funded by the drug companies. Blech.

Blessings,
Liz, The Good Raised Up

Contemplative Activist said...

There's a lot of debate in using language for these things atm.

When it comes to individuals I usually ask...but writing applications forms for jobs and courses is making me think about how I word things.

My supervisor was horrified when I wrote the official name of a GLBTQ youth shelter I volunteered in when I was in NY. "Queer" is considered generally quite insulting in the UK. Correct me if I am wrong, but in America, people seem more than comfortable with it. He suggested for the sake of my application form for clinical training, I should take the 'Q' out, which I have done!

I suppose my experience with deaf people/people with hearing impairments is coloured as most people I know who are deaf are signers and have taught me to sign. They tend to be proud of their identity as deaf people, and want to be identified as such.

On drugs companies funding ADHD research - oddly, I think it is responsible of them to do so. Without the funding, there would be little advancement in the area. HOWEVER, I do think we need to be more critically aware of how the funding for our research influences the research that we do, so that we can strive to be more balanced, and also to consider paradigms that are more critical of 'ADHD' as a diagnosis and medication as a treatment.

CA

Jeanne said...

You raise interesting questions about ADD/ADHD. I was diagnosed with ADD as an adult. After reading your post, I wondered if perhaps you could consider some of your social construction questions about adults as well as children.

You say, "It is possible that the social disapproval and resulting stigma and systematic exclusion of children who have ADHD symptoms may cause more distress than the ADHD symptoms themselves per se."

My experience was that the diagnosis has helped and is helping me deal with the shame that was heaped on me when teachers, peers and parents called me "lazy" or "stupid" or "not working up to your potential." The diagnosis is also helping me utilize the gifts that ADD bring, and deal with the limitations.

On example is with school. I have returned to school, after almost twenty years, to finish a BA I couldn't finish the first time. Now, because of the Americans With Disabilities Act, I can have "reasonable accomodations" in school which include taking tests in a private room, getting notes from other students, and getting specific written feedback from instructors and other students.

After a year in school, I have a 4.0 gpa. And I have never taken Ritalin or any other med.

It is important to ask tese questions about children because they can't necessarily take control of their lives in the way that adults can. However, I think you can perhaps get some insight on how to present things to children, and how to support children, by asking adults with ADD.

Lora said...

Excellent discussion on the social contrustion of the "disease"

Shortly after I graduated college I was diagnosed with ADD (inattentive type) and LDs in sound-symbol association and word letter identification (I assume that's dyslexia). I briefly tried meds, but had intolerable side affects and decieded to not explore other options.

I try to take good care of myself, keep my stress level low, and be more self aware. I also try to modify my personal expectations, often easier said then done.

I think that getting a diagnosis made it easier for me to recognize and except my own uniqueness. I would consider exploring meds in the future, but meds I see them as taking asprin for a headache. If I need to be on them all the time to function in the life I choose to live I'm better off changing my expectations, as against the grain as that idea may be.

Rich in Brooklyn said...

I don't have much to add to this discussion, except to say that I am grateful for its thoroughness, balance, intelligence and fairness.

Thank you.

- - Rich Accetta-Evans
Brooklyn Quaker

Contemplative Activist said...

Thanks Rich :)

Lora - there are loads of meds for ADHD. Some people have bad effects on one and do fine on another. If you felt you wanted or needed meds, I'm sure you could find one that worked for you.

Jeanne - indeed, most of my more "radical" ideas about ADHD come from discussions with adults. Interestingly, I think there are differences between UK and US adults who say they had ADHD. In the UK, most of the adults I've talked to are quite stressed out and feeling like they really need help with their ADHD - but over here, there are very few professionals who know anything at all about adult ADHD.

In the US, a lot of adults are very positive about it, seeing it as part of who they are and saying they wouldn't want to not have it.

Never read any papers on it tho!

Thanks all for your comments.

CA

sandy said...

My husband has ADHD, both of our sons do too. Our 10 year old is also autistic. They all need meds at times but the biggest help I found was a gluten free casein (dairy) free (GFCF) diet. Researchers estimate that two thirds of people with Autism and ADHD have a leaky gut. This is a condition where the gluten and/or dairy protein leaks through the intestine into the bloodstream where it lands on the same receptors in the brain that narcotics do leaving the person acting like they are on narcotics. His symptoms improved dramatically after he started this diet. His developmental specialist told me to give both boys mountain dew (caffeine) to help them calm down. My husband takes a can in his lunch every day because he finds it helps him. I do believe that ADHD is very over diagnosed but that real cases do have neurotransmitter imbalances.

Anonymous said...

Hi Dede, I'm writing a research paper on the rising prevalence of ADHD in the US and found the Stahler cartoon you had posted on your blog to be particularly thought provoking. I know this blog entry is pretty old, but I'd like to use the cartoon to introduce my topic and am trying to find out some more information on the piece and the context in which it was published. Do you happen to recall where you found the Stahler cartoon and whether or it was a part of an article on the topic? I know it is from the Cincinnati Post which has since been discontinued, but any information you might be able to offer would be immensely helpful.

Thanks!