The Devil's In The Diagnosis
Elyse: This is the MIDNIGHT IN CHICAGO podcast channel with Podcast Number 14, The Devil's In The Diagnosis for March 2009.
Thomas: Hello everybody out there in cyberspace. My name is Thomas D. Taylor. With me is Elyse Bruce, and I would like to welcome you to another Midnight in Chicago Autism Spectrum Podcasts in which we will be discussing diagnostic processes and the ups and downs associated therewith so that parents will have a better idea what to expect when they bring their own children in for diagnosis. Our guest this month is Dan Berger. One of his children has been diagnosed with ADHD, and Dan has graciously agreed to share his experiences on their journey from parental concern through to medical diagnosis.
Elyse: I get the feeling this is going to be a very encouraging podcast with a fair number of “A-ha!” moments for our listeners.
Thomas: I agree!
Elyse: The Midnight in Chicago autism spectrum podcasts are a series of interviews and fact based podcasts that are useful to many including parents and caregivers, educators, autism organizations, individuals with Autism.
Thomas: Over 500 hundred health and autism organizations around the world as well as experts in the field of Autism Spectrum Disorders have linked to our podcasts from their websites and in their newsletters.
Elyse: All of these podcasts can be found at www dot midnightinchicago dot com. Click on the PODCAST tab on the lower left hand side of the screen to access these podcasts. Alternately, you can download them via iTunes.
Thomas: If you would like to link to the Midnight In Chicago autism spectrum podcasts, please contact us at bruce at midnightinchicago dot com where we’ll be more than happy to discuss possible linkage with your site.
Elyse: As we do with all our podcasts, we underscore strongly to listeners that neither we nor our guest are medical or legal professionals unless our interviewee states he or she has specific credentials. The opinions expressed in these podcasts are fact based opinions as well as personal experience. We strongly encourage our listeners to consult qualified medical professionals if they wish to get medical advice that is correct and appropriate regarding autism.
Thomas: And now to our guest. Dan Berger is a writer and stay-at-home parent living in the northern suburbs of Chicago with his wife, Terry, and two boys, Ryan and Alec. Most recently, Dan has written several articles for Moonstone Books, publisher of the Buckaroo Banzai comic book titles. His latest work includes an interview with screen writer and novelist Earl Mac Rauch for Moonstone's Trade Paperback collection of "Buckaroo Banzai: Return of the Screw." Dan also serves in a consulting role, developing the collection’s supplementary content.
On a personal note, I’ve known Dan for about ten years dating back to when we worked together at a bank in the Metropolitan Chicago area.
Elyse: Dan has been the stay at home parent since Ryan's birth in 2000. Dan’s older son, Ryan was diagnosed with ADHD a few years back.
Thomas: But before we continue, I would like to mention that it was Dan who suggested MIC do a podcast on ADHD. This made sense as ADHD is a co-morbidity oftentimes seen with Autism Spectrum Disorders. It is also true that Asperger’s Syndrome is often misdiagnosed as ADHD only to be corrected in subsequent testing. So when Dan suggested this podcast, Elyse and I thought it would be great for parents to hear the Berger’s story, regardless of any diagnosis another child or children may or may not have.
Dan: More or less that’s how it happened. Tom and I were discussing Midnight in Chicago over the phone about the time that the podcasts were first being introduced in early 2007. He was stoked about the podcasts and asked me to check them out, so I did. I thought there might be opportunities to expand the subject matter beyond the confines of Autism to embrace related topics. One thing that struck me in particular was how some specific experiences tend to be fairly universal among parents of special needs children.
Thomas: This is why Dan ended up doing some of the legwork on this podcast. I believe you’re getting recording credits on part of this podcast.
Dan: Yep.
Elyse: When I got your email about your recording device, I loved the way you phrased it. Just for me, could you repeat it here before we get into the meat and potatoes of this podcast?
Dan: You mean when I said I was going to record my part on my brand new Creative Zen MP3 player which is quite possibly one of the coolest things ever?
Thomas: That’s what she means.
Dan: Consider it done.
Elyse: Can you tell us just a little bit about your two boys?
Dan: Let's see ... Alec is a typical five-year old. He's an active, outgoing kid who wants to do everything his big brother does. Ryan is eight and in grade 2. Sometimes he's outgoing and social and sometimes he just wants to be alone with his Legos or reading a book. Ryan and Alex both have fantastic imaginations but Ryan is more distant and Alex is more active and has a bit more common sense than Ryan does. Both boys are really independent though which is great.
Thomas: At what point did you begin to notice that something was different about one of them?
Dan: When Ryan was three, we enrolled him in a class at a children’s fitness and activity center for kids six weeks and up. After a couple of sessions, the instructor told us that Ryan was exhibiting unsafe behavior -- things like bumping into other children and generally having problems with boundary parameters for himself and for others. A few months after that, Ryan started pre-school. He was displaying a lot of trouble staying on-task and following instructions. Of course, this led to more than a few phone calls from school and some of those phone calls resulted in unpleasant discussions with his teacher.
Elyse: Was the school able to determine what was driving his behaviour. IN other words, was this a sporadic or ongoing problem the school was seeing?
Dan: Ongoing and very much so.
Thomas: At what point did you and your wife decide this was something you should discuss with a professional? Who made the decision to see a doctor about the problems Ryan was experiencing?
Dan: Actually, Tom, our first line of inquiry wasn’t medical at all. We were told that the fitness and activity center was losing one of their employees which meant they felt they couldn’t keep close enough tabs on Ryan to keep him safe when he was participating in their classes. It was one of those low points where we finally asked ourselves, "What's going on here? What can we do to help Ryan get on track?" At that point we consulted with our pediatrician, but that’s as close to ‘medical attention’ as we got. That pediatrician’s visit led to a referral to a specialist in child psychology.
Thomas: So it was pretty straight forward, then? You saw the psychologist and Ryan was diagnosed?
Dan: Not exactly. You see, when we started seeing the child psychologist, that’s where the fun really began.
Elyse: In what way?
Dan: Well, once we decided to get to the bottom of what was going on with Ryan, that where the complications began. It’s hard enough for adults to sort through emotional, behavioral and neurological issues so you can imagine how much harder it is for adults to do that for a child. Development during early childhood is so fast that it’s sometimes nearly impossible to tell what’s a developmental delay that will sort itself out over time from something that can’t sort itself out no matter how much time you give it. That was our experience at least.
Thomas: From what I’ve heard in my forums, and from talking with people at autism conferences and symposiums, it’s not an uncommon experience. I know of one case specifically where the initial diagnosis was Attention Deficit Disorder, then Attention Deficit Hyperactivity Disorder, then Asperger Syndrome, and finally PDD NOS or Pervasive Developmental Disorder Not Otherwise Specified.
Dan: I hear that. It’s five years later now and sometimes I think we’re still experiencing a ‘Pervasive Developmental Disorder Not Completely Understood.’ And it’s not just confusing for us. It can be just as confusing for the medical professionals we deal with on a regular basis. We’ve come a long way, but there’s still a long way to go.
Elyse: I know from experience as a parent of a special needs child that sometimes it feels like the battery of tests is never going to end and that the answers are nowhere in sight. How extensive was the testing in Ryan’s case and how were various potential disabilities ruled out?
Dan: The testing has been extensive and ongoing; everything from hearing and vision testing to tests profiling behavior, cognitive ability, and developmental benchmarks. This was particularly tricky when Ryan was lot younger. Behavior seen at age three can be totally by the time the child turns four. Sometimes it’s normal development and just really taxing on the parents and sometimes it’s a developmental delay that sorts itself out. In Ryan’s case, it was neither. Ruling out various disabilities was really hard on us because Ryan was initially diagnosed with Sensory Integration Dysfunction at age three, a condition is similar to ADHD in many respects. It literally took years to sort things out. In fact, we’re still sorting through possible co-morbidities.
Thomas: So just because a diagnosis is made, a parent shouldn’t just assume the answer is a final answer? It’s possible then to have surprises crop up later on after the initial diagnosis?
Dan: Absolutely. Ryan’s diagnosis of Sensory Integration Dysfunction was the primary diagnosis up until he was six. That’s when Ryan began kindergarten. At that point, it was clear that something else other than the Sensory Integration Disorder was causing problems for Ryan. We did more testing and when all was said and done, Ryan’s new primary diagnosis was ADHD with Sensory Integration Dysfunction as a possible co-morbidity. That was well and good except that, over time, there were other quirks that didn’t quite fit ADHD or Sensory Integration Disorder. It got to a point we had to ask ourselves again, “Have we figured everything out yet? Are we missing something here?”
For instance, on occasion Ryan will bop himself on the forehead or spin in place out of the blue. Those are classic symptoms of autistic behavior but according to the DSM IV it isn’t symptomatic of ADHD. Is this behavior symptomatic of Ryan stimming because, surprise! he actually falls somewhere along the autism spectrum, or is the behavior a coping mechanism associated with sensory issues, or is it totally unrelated to a separate co-morbidity and something else entirely? The questions never end. After a while, you begin to realize that the diagnostic process is as much an art as a science. Actually, it’s more art than science in some cases. You also start to realize that there is such a thing as focusing so much on finding specific answers to the symptom du jour that you lose sight of the big picture in potentially unrelated details. It’s a very real danger.
Elyse: It is expected the when the DSM V is issued in May 2012, many of the behaviors listed as being indicative of an autistic spectrum disorder may be re-thought, revised, replaced, or simply eliminated as researchers begin to learn more about autism. This may initially cause confusion when someone is in the midst of being diagnosed. Conversely, such a revision would be more accurate than previous revisions since research into autism this past decade –and published findings related to that research- has been more extensive than in the years prior to previous revisions.
Dan: Well, more accurate than what it is now, anyway, but right now it’s all speculation. That’s the frustrating part. With something like AS or ADHD, the target keeps moving. It’s difficult to know what details draw a line around a diagnosis and what details draws attention away from the right diagnosis.
Elyse: Still, don’t you risk the possibility of missing something if you ignore the details?
Dan: Absolutely. Whoever first said that “the devil is in the details” wasn’t lying.
Thomas: You mentioned that there were a number of co-morbidities that were ruled out. Asperger's Syndrome is a Pervasive Developmental Disorder and really isn't a co-morbidity, but was Ryan at any time ever suspected of having AS? And if he was tested for it, why was it ruled out?
Dan: Actually, with ADHD being a Neurobehavioral Developmental Disorder, the issue of whether ADHD or AS is a primacy diagnosis or a co-morbidity is a nit that probably hasn’t been picked to its conclusion in the halls of neurophysiology, neurochemistry, genetics, and heaven knows what else, so it’s best to not even go down that road yet. In any event, AS didn’t come up as a potential co-morbidity. We figured Ryan’s overall profile was asymptomatic on that score, but over the last year or so we’ve started to wonder.
Elyse: What do you mean? It sounds as though someone or something changed your minds.
Dan: I suppose a bit of both. Over the past few months, my wife Terry read a number of books including Born on a Blue Day and Look Me in the Eye, as well as The Unwritten Rules of Social Relationships. A lot of Ryan’s experiences and behaviors synched up with the behaviors and experiences of the authors, all of them diagnosed with Asperger’s. That was a bit much to chalk up to sheer coincidence in my opinion. Still, we didn’t want to jump to any conclusions because the books are anecdotal, not scientific. So we asked several people Ryan was already seeing in a therapeutic setting if it made sense to test him for AS. Almost all of them stated that testing might be a really good idea.
In addition to that we’ve seen a lot of success with the combination of Concerta and behavior modification, which suggests that ADHD is, at the very least, a major force at work here. That said, we get the feeling that ongoing successes depend a lot on fine-tuning what specifically is helping Ryan out the most. Making those therapeutic modifications looks more and more like it may mean a diagnostic amendment as well.
Elyse: When the diagnoses began to roll in, how did you feel when the news hit?
Dan: It’s hard to say. Even though the diagnoses began as soon as the testing did, nothing seemed to be the ‘final word’ in any useful way for a long time. It wasn’t until Ryan was in kindergarten that he was diagnosed for sure with ADHD, but the possibility of ADHD as the root cause of some of his behaviors came up long before then back when he was three. Again, Ryan’s age was the main reason why diagnostic certainty was in limbo for a couple of years, and that uncertainty was pretty unbearable. I’d have to say it was more difficult to deal with than the diagnosis itself.
Thomas: Some parents view a diagnosis as being disastrous. Did either of you feel this way? And if so, have you gotten through these feelings? And if you did, how did you do it?
Dan: I’d have to say that the lack of a firm diagnosis was the hardest part of it all. It’s difficult to sort out what to do and how you feel when you don’t know what’s going on or how to deal with it. That being said, I think the emotions we had to sort through were mostly frustration over the situation and anxiety over what would become of Ryan. I’m not sure that I ever felt a sense of loss so to speak … you know, a sense that ADHD had taken away Ryan’s chance at being the child we envisioned when he was born. I know that happens, and there was probably an element of it there, but ultimately Ryan is who he is and we love that about him. Still, I’d be lying if I said that his behavior wasn’t frustrating or a source of anxiety. That took a lot longer to work through—a lot longer to accept.
Thomas: What would you like to say to panicky parents, or parents who are experiencing frustration or anxiety because of situations not unlike your own?
Dan: First, and this one isn’t easy, you need to get past the feeling that you could have done things differently … that somehow all of this could have been avoided if only ‘x’ had happened. This is a mind game based on doubt, blame, and guilt that people almost always end up playing against themselves and, of course, they lose. Don’t worry about what happened in the past unless you have a time machine where you can go back and change things. See it, accept it, deal with it and move on. I’d also have to say you need to get plenty of rest. Frustration and anxiety usually translate into bad sleeping habits, and that only adds more frustration and anxiety to the mix. In order to ease your own mind so you can sleep, remind yourself that you aren’t the first parent to ever face these issues and you won’t be the last parent facing them either. Admit to yourself that facing the issues has every chance of improving matters over time for everyone affected by the diagnosis.
Be sure to take a good hard look at your expectations, both for yourself and for your child. Chances are those expectations are going to need some adjusting. Expect things like a diagnosis, intervention or treatment to take longer than advertised. I find that most people operate on best case scenarios and, truth be told, best case scenarios aren’t typical. They’re best cases. Also be prepared for the possibility of alternating episodes of progress and relapse. The good news is that typically the steps forward outstrip the steps backward in time. There’s so much to say that I’m a little worried I’ll forget to mention something.
Try to prepare for the next step before you get to that next step. Most people find this difficult to do because parenthood doesn’t leave much room for spare time during the first three or four years, but trust me, it pays out major dividends. When your child is in pre-school, start looking into how the special education system works in your school district instead of waiting until your child is already in kindergarten. It takes time to get things set up within school boards regardless of what country you live in. Read up on the purpose and function of an Individualized Education Program and how it is different from the 504 plan we have in schools here.
There are a number of support groups for parents of children with just about every diagnosis under the sun. Talk to other parents and to medical professionals to find out which ones might be a good fit for you. Attend a few meetings and stick with the group or groups that offer the kind of support you need. You’ll find that these groups are phenomenal sources of information and you can share what you’re going through without feeling like no one understands. Trust me, there’s going to be other parents there who will totally get what you’re going through.
Now about information … be careful when it comes to the grapevine. A lot of anecdotal information floats around support groups, advocacy groups and the ever-lovin’ interwebs. Oftentimes, legitimate information gets filtered incorrectly and turned into rubbish either because people don’t understand the information or because they don’t agree with the author or source of the information and decides to trash the author, the information, and his successors no matter what. A good rule of thumb is this: if someone is trying to shout other people down or is trashing someone or something in a field that they themselves have not been trained in formally, nod politely, and walk away the first chance you have to do so. Ask a trained professional to provide correct, factual information.
Finally, and maybe most importantly, give both your child and yourself a break. Chances are, you both need one more often than you get one.
Elyse: Have you made Ryan aware of his diagnosis yet? And if you did, how does HE feel about it?
Dan: Yah, we told Ryan about his diagnosis. It was impossible not to once he began taking Concerta, but starting on medication to manage his ADHD wasn’t really the determining factor. He needed to know, and he needed to know that, well, this is part of who he is; that a lot of people have ADHD and it’s OK to have ADHD.
How Ryan feels about it, on the other hand, is tricky. I think his emotions about ADHD are complicated, and he’s at an age right now where sorting those emotions out and communicating them to others is pretty complicated for him.
Thomas: What are some of the emotions he is exhibiting about his diagnosis? And how do you, as a parent, help Ryan with them?
Dan: Oh wow! There’s no simple answer to that question. I think the most unnerving time on that score was when Ryan told us that he was making a bad choice because he was “stupid.” The best way I could think to handle that was to explain the difference between ‘intelligence’ and ‘wisdom,’ and to point out to him that he wasn’t stupid at all. I pointed out to him that, quite the opposite, he still has a lot of growing to do and that I did a lot of foolish things when I was his age. We all do. Wisdom is what comes from those experiences.
Elyse: What form of treatment or intervention have you and Terry chosen for Ryan at this point in his life?
Dan: “Treatment” isn’t really the right word. ADHD, like AS, isn’t something that you look at as being curable or incurable. It’s not a disease. It simply is. You can manage it; sometimes with behavior modification techniques, sometimes with medication, frequently with both and that’s about it. Both AS and ADHD share the some of the same behaviors possibly diminishing in intensity in adulthood if a person can master various coping strategies, but the bottom line is that there are no cures in either case.
Thomas: Mmm …. I think I’d say that with regards to spectrum disorders, no autistic behavior lessens for any prolonged period in adulthood. If you could graph autism over the course of a lifetime, it would look like a series of waves, with the dips being periods of less intense autistic behaviors manifesting themselves and the tops of the waves being periods of heightened autistic behaviors manifesting themselves. In both childhood and adulthood, autistic behaviors can be suppressed when in public with the success of that suppression depending upon around the ability of the autistic to cope to find socially acceptable outlets for the stress associated with the suppression. More often than not, behind closed doors, autistic behaviors are allowed spontaneous freedom. This in itself is a good way to release stress associated with suppressing autistic behaviors in public venues. But you were talking about lifestyle modifications for Ryan …
Dan: Well, as long as we’re going to discuss this, ADHD is very much cut from the same cloth. Here’s a little remembered fact from long ago: ADHD was considered to be a childhood ailment that your child would eventually outgrow as he got older. That line of thought has changed as more and more, doctors are seeing ADHD persist into adulthood where it doesn’t so much ‘go away’ as tends to be invisible in those people who master effective coping strategies. Left to their own devices, adults with ADHD typically ‘let go’ in similar fashion. But that’s taking us off on a tangent there. At present, Ryan is taking a medication called Concerta. It’s a Ritalin-based drug, and once the dosage was sorted out, it really helped him get to a point where he could manage his impulsivity and lack of focus much better. It wasn’t a ‘magic bullet’ by any means but it was part of a larger therapeutic equation.
There’s a long story covering Ryan’s journey within the public school system, but the short version is that there came a time in December of 2007 when we sat down with the school and determined that Ryan would be best served attending a SEDOL school. SEDOL being an acronym for the Special Education District of Lake County. That move has made a world of difference in many ways, but not without its own set of troubles. The school he now attends focuses on behavior management and modification using a highly structured system of rewards and negative consequences. It’s a common and effective strategy in managing ADHD, particularly when used in concert with medication, and it seems to be working.
Elyse: I think what you experienced by trying to get Ryan into an ideal school setting is something most parents encounter but aren’t necessarily successful at putting into place. It’s difficult to find a proper placement when a diagnosis isn’t nailed down, and even after a diagnosis has been made, finding a program that best suits the child’s needs can be almost impossible. The program may be out of date and contrary in methodology to what children need, the teachers may not be properly or adequately educated in the specifics of certain diagnoses, or simply not educated enough in the area of the child’s difference, and so on.
Dan: I think it’s worth remembering that both AS and ADHD are not terribly well understood. In both cases, the ideal program for any given child likely has yet to be invented.
Elyse: What sort of behavioral differences (if any) at home and at school have you noticed in Ryan's behavior before and after intervention?
Dan: Before we began with an intervention, Ryan was all over the map as far as behavior goes. Children can be in general, so it wasn’t just a matter of the ADHD. His biggest issues were impulsivity and off-task behavior. Since treatment began there has been major improvement on both these fronts. I have to mention that things start going south once the medication wears off, but it’s not nearly as much as it once was. Ryan still has troubles even while on Concerta with regulating himself in situations where he’s over-stimulated, especially when the group is 12 people or more, or when he’s particularly excited to see someone or do some activity he enjoys.
Elyse: What sort of cognitive differences (if any) have you noticed at home and at school in Ryan's behavior before and after intervention?
Dan: There really hasn’t been much in the way of cognitive differences. It’s difficult to know too just how much the changes in Ryan’s behavior are a function of his development as a growing boy and a matter of intervention. Time has a way of sorting these things out, especially when you’re dealing with younger children. Are the differences a matter of growth or a matter of therapeutic approach, and in what proportions? There’s no answering that because it’s impossible to know for sure.
Thomas: I agree with you there, and this is probably something every parent should know: While there are typical outcomes which have been recorded as the result of interventions, and while these typical outcomes are sometimes termed “expected outcomes” each individual is different and may respond differently to those interventions.
Elyse: I would add to that by saying that an “expected outcome” is actually a very misleading term. It implies that with a course of treatment, one should “expect” a certain outcome. Too often, the result of failed expectations is a transition to a “stronger” or “more radical” treatment, when in fact a restructuring of the initial intervention may be all that is needed. Expected outcomes are based on the bell curve and don’t take into account each individual’s uniqueness.
Thomas: I have a theory that this is how some children wind up being over-medicated. A doctor or parent believes the expected outcome is not achieved, so they boost dosages or add additional meds. The result can sometimes be undesirable side-effects which wind up exacerbating the initial diagnosis. Parents need to educate themselves in advance about all the physical, mental, and emotional components of any diagnosis and the interventions and treatments associated with them so that they can forestall potentially bad –and needless- digressions in treatments before they happen. Dan, what do you know about the origins of ADHD, and how do you feel about the fact that one of your own is diagnosed with it?
Dan: I’m not sure the origins of ADHD are well understood to begin with, even today. There seems to be a genetic component involved. Beyond that, things seem to get less certain. As far as how I feel about Ryan having ADHD … that’s complicated. On bad days, I probably rail against it more than I should because I have similar characteristics. Ryan is impulsive and that wears away at the strategies I’ve formed over the years to better organize my own behavior. Not a good mix. On good days though … and there are more and more of those as time goes on … it’s not that big deal. The key is really accepting the situation because the situation isn’t going to change. And it’s not a dire situation either. Once you begin to enter into the therapeutic side of things and you see some of the things other children are up against, you realize matters could be a lot worse. Once that realization hits, it’s a lot easier to count your blessings.
Elyse: I think that’s a healthy view to have actually. Parental acceptance of a diagnosis means that, rather than wasting time getting through feelings of denial, a parent’s energies can be more quickly applied to actually working through the situation. This benefits the child directly and it places the parent in an active role. They are doing something to control the situation rather than letting the situation take control of them. You mentioned there are a few similarities between your behaviors and Ryan’s. Do you or Terry have an ADHD diagnosis?
Dan: Nothing formally diagnosed, although, looking back at my own childhood and comparing it with Ryan’s journey so far, I wouldn’t be surprised if I have ADHD myself. Considering that ADHD often runs along family lines, it would make sense.
Thomas: What about extended family members?
Dan: Again, nothing formal, but given our age that doesn’t mean much. Our parents grew up during a time when ADHD was a virtual unknown. By the time I was in school in the early seventies, ADHD was still emerging as a known quantity on the intervention end of things, so it wasn’t very well understood and rarely diagnosed. For a while there, it was the ‘enfant terrible’ in the 90s as every spirited child who marched to the beat of his own drummer was tagged as ADHD and most of those tagged kids of the 90s were just, well, spirited. Even today, ADHD is only understood in broad strokes.
Elyse: And I suppose that is something worth reiterating: ADHD was virtually unknown two generations ago. The research and interventions available are based on what is known about ADHD, but I medical research appears to still be in the early stages of understanding ADHD and more effective interventions will be discovered and proven in practice in years to come. By no stretch of the imagination should parents today think that if an intervention is working now, that this is the only intervention to use, now or in the future. Dan, what was the thought process behind medicating and what reservations, if any, did either of you or Terry experience before deciding to go with meds?
Dan: Basically it was our place of last resort, and we had plenty of reservations. Children, on a certain level, are massively active biochemical plants. The thought of adding anything more to that already explosive mixture, particularly when there are uncertainties as to how medication might effect their development in the long-term, is a frightening prospect. All ADHD medications come along with possible side-effects—some potentially nasty. If that doesn’t give one cause for reservations, it’s probably because they’re a rock. At the same time, we never said, "Meds? Not in a million years." Once it was clear to us that other therapeutic approaches could only help so much, we were more than willing to explore the possibility of medication. Fortunately for Ryan, it’s made a world of difference.
Thomas: Kids with AS are quirky, and almost immediately and invariably rejected by their peers. Do you know whether or not anything like that happens with ADHD kids? And if so, do you have any ideas about what can be done to better integrate them with their peers?
Dan: Absolutely. Kids with ADHD can be quirky for sure. I know when I was growing up, peer rejection was very real and very painful. Ryan is quirky in his own right, and he’s seen his share of rejection and isolation as a result of that uniqueness. Still, that rejection has been far from universal. As far as integrating children with ADHD or AS or any other diagnosis goes — I don’t think there’s a person alive who has a good answer for that one yet, otherwise it would have been accomplished by now. Really, when you think about it, each and every one of us has quirks. Period. Human nature tends to push us towards uniting with others who share the same quirks, and then identifying those who are different and entering into conflict based on those differences. High school is a case study in that dynamic. The tribe of jocks rubs up against the tribe of nerds, the cheerleaders rail against the Goth girls, et cetera. The lines are drawn and integration hits the rubbish heap hard. The same goes for people with AS or ADHD or what have you. Once you establish yourself as a member of the tribe, human nature kicks in and conflict ensues. I think something that feeds into the problem is defining what is “special” about someone as a function of a diagnosis. I have heard too many people tell their children directly or indirectly, “This diagnosis makes you special.” My personal conviction is that this is damaging in two ways.
First, adopting, and then reinforcing a definition of what makes a child special sets a child up to see themselves primarily as special because of the diagnosis rather than as a function of their own peculiar interests, beliefs, and natural creativity. ADHD or AS certainly sets the individual apart in some ways, but it can hardly be said that every child with ADHD or autism is like every other child with ADHD or autism. Who the child is makes the child special. The sum of a person is so much more than any single characteristic or diagnosis.
Second, the pigeon-holing effect of a diagnosis can start leading children down the road towards thinking that the diagnosis really is the one thing that defines them, and that all other things become passive in comparison to that one guiding cardinal point in their lives. That can lead to a spot where a child very quickly starts isolating himself or herself just as much as they are isolated by others based on the idea that because there is a diagnosis, the child is not like anyone else. It gets worse as it deteriorates into thoughts that he or she is never going to be like anyone else, so why bother trying to make connections with others. Therein lays the road to dysfunction.
So, regarding the whole question of integration, the only answer I can think of is to convince people to focus on points of commonality. Forget about embracing other peoples’ differences. It’s a noble sentiment, but the ugly truth is that humanity probably isn’t wired that way. The upside is that once people begin to identify commonalities rather than focus on differences, they tend to embrace the whole package, quirks and all. That’s the hopeful side of human nature.
Thomas: I believe that focusing too much on differences can have the same effect sometimes. I believe it is important to state “These symptoms are what characterize your diagnosis.” “You have these characteristics. Others do not.” And obviously differences that impair one’s ability to function in the world need to be addressed to maximize the opportunities for success the person with differences has. Yet at the same time, I have known parents to discipline a child in order to get them to “act normal” when their natural quirkiness prevents them from doing so, or to talk down to their children or reject out of hand what they say or accomplish merely because they are “not normal.” I would say that in the majority of these situations, parents may not even be aware they are behaving this way. They may be acting instinctually. What are your feelings about this Dan?
Dan: First, I think what everybody -- and I do mean everybody -- dealing with developmental disorders needs to remember is that everybody falls somewhere within the broad spectrum of disorders. I mean parents and educators of children with a diagnosis as well as the public at large. That’s part of the reason I consider the term ‘neurotypical’ to be, quite possibly, one of the greatest and over-used oxymorons of our time. Find me someone who is neurologically emblematic of a specific idealized form or synaptic means and I’ll show you someone who hasn’t sufficiently refined their criteria. We’re all calibrated in ways that, if you look closely enough, harbor an element of autism or ADHD or any number of disorders. In most ways, ‘normal’ is anything but, and then again, neither is ‘quirky.’ So, that gets you to a place where you need to start asking questions like, “What is the function of discipline in the broader realm of regulating any child’s behavior?”
What is any specific person capable doing based on their own unique neurological blueprint? What is the most functional way to sort out and match ones’ childhood predispositions and abilities with the appropriate strategies to mold them into a functional individual while giving them space to find their own path, especially when what is ‘functional’ means different things to any given individual? How about when it means different things to the progressively larger social groupings of various individuals based on criteria of all sorts like culture, socioeconomic class, hobbies, education, et cetera? To bring things back to the basics, if parents expect perfection from their children, and children expect perfection from their parents, everyone is going to be disappointed big time in the long run.
Elyse: Did Ryan and Alec have problems getting along with one another because Ryan has ADA? And if so, how do they get along now that the interventions are having an effect on Ryan?
Dan: Honestly, Ryan and Alec are pretty typical that way, both before and after various interventions came into play. They both love and loathe each other the way brothers do … helping each other out, playing together, pressing each others’ buttons, squabbling. It’s what siblings do. Where there’s been an effect, and where we had concerns, had to do with Alec. Being the younger brother, we worried he might pick up on and mimic Ryan’s behavior — some of that certainly happened along the way and it still happens from time to time. That’s where the ‘after treatment’ part has its effect, and a good one at that. Still, they’re brothers, and they act the way brothers traditionally act.
Elyse: There are many parents out there who, much as I hate to say it, find it hard to accept that their kids have a diagnosis. What’s worse, some parents find it hard to accept their children after they are diagnosed along with being unable to accept the diagnosis. What would you say to these parents to help them see things differently?
Dan: My personal belief is that you really have to count your blessings, take a deep breath, relax, and look beyond the diagnosis. I think it’s helpful to understand that it’s a two-way street. This is probably difficult to get across to younger children, but even adult children find it difficult to accept their parents’ reactions to the situation. The reactions of others around the parents and children dealing with a diagnosis can set up the dynamics for a ‘me against the world’ stance that only makes matters worse. Difficulties accepting situations that are not ideal are perfectly natural, and that’s going to lead to bumps along the way on both sides. Accepting the situation and working to improve it takes patience and a clear head — no easy thing when difficulties stress you out.
Elyse: As Bette Davis said in “All About Eve” – Fasten your seatbelts; it’s going to be a bumpy night!” or ride, in this case.
Dan: Pretty much!
Thomas: If you could provide any words of encouragement or useful tips to parents of kids diagnosed with ADHD, what would they be?
Dan: I think the most encouraging thing is to look around and see that most people diagnosed with ADHD have turned out to be happy, productive, well adjusted adults. It’s not the exception either. A diagnosis isn’t easy for the children or for the parents, but it’s no death sentence either. The truth is that difficulties oftentimes bring out the best in people. They help us grow in the best ways imaginable. And always, always remember that you are not alone in this. Many people deal with ADHD both as a disorder and as caregivers of children with the disorder. Help is out there.
Thomas: Our time is beginning to wind down. Dan Berger, it was a pleasure having you with us.
Elyse: I agree, and I would like to thank Dan for agreeing to do this podcast.
Dan: Thanks for asking me to participate and to give my views on ADHD.
Thomas: Our purpose was to discuss diagnostic processes and the ups and downs associated therewith so that parents will have a better idea what to expect when they bring their own children in for diagnosis. We hope we’ve been able to provide a perspective that is beneficial to any of who have listened to this podcast.
Elyse: MIC realizes and reiterates that the information we provided in this podcast was a general overview of one family’s adventures with ADHD. Neither we nor our guest are not licensed and accredited medical professionals, and the information in this podcast provided are opinions only. Nothing is to be taken as medical advice. There are number of good sources online and at your local library on ADHD and, of course, the source of information ought to be from your primary care medical practitioner.
Thomas: Thanks for listening, and please keep an ear out for more Midnight In Chicago podcasts on Autism Spectrum Disorders.
This program was made possible by donations and contributions to Midnight In Chicago as well as purchases of MIC Art and CD by listeners like you.
Elyse: Love people with a difference.
© Thomas D. Taylor, Elyse Bruce and MIDNIGHT IN CHICAGO, 2009. All rights reserved. The MIDNIGHT IN CHICAGO Audio Podcasts on Autism and transcripts cannot be reproduced without first obtaining written permission from the copyright owner. Contact bruce @ midnightinchicago.com to request permission.