Does everyone with AS want or need a diagnosis?
Sarah is a New Zealand trained clinician working in Australia. As someone skilled in recognising autism spectrum conditions, she often faces a  dilemma about disclosure of possible AS to her patients. She wrote this for humans. She also has a website www.aspiesontv.blogspot.com
As a clinician working with a range of general patients, but with a research and clinical interest in developmental disabilities such as AS, I’ve been thinking recently about the ethics of when to diagnose AS, particularly when someone is in my care for another psychological problem.
People with AS who have discovered the diagnosis themselves will often have enthusiasm for the concept of AS, reasonable insight and good psychological awareness. But what about people who have little insight and/or little psychological awareness and interest? Should they be introduced to this concept without asking, when they are presenting for care for something else? How would this affect their relationship (and mine!) with their existing psychiatrist and/or psychologist, who have often seen the patient for many years and provided the best care they can? Can I be sure that the person would not do better believing they have Bipolar Disorder or some other diagnosis? Interestingly, those with the most obvious symptoms, even with relatives with ASDs, are least likely to bring up the idea of whether there is another diagnosis, due perhaps to the reduced insight in more severely affected people.
I’ve struggled with this idea for a while now. I had thought that surely everyone would rather know the truth about all their diagnoses, but I feel now there are some people who really would not. These include:
-Those who have no current psychological complaints, no interest in psychology and are happy with their lifestyle, even if they seem odd or their lifestyle seems restricted to others
-Those who do have psychological complaints but no interest in psychology, and who are currently dealt with adequately under other services and labels.
One group I am uncertain about, though, are those who appear to have AS, had a stressful upbringing or some other major life stresses, current psychological problems and some interest in psychology. They may attribute all their complaints to the environment. If I suggested there was another reason apart from the environment for their complaints, this may disrupt their whole world view, especially if they’ve been seeing a Freudian psychoanalyst!
An example might be Janet Frame. Her clinicians in England decided that her problems later in life: lack of social skills, depression etc. were “caused†by being in hospital. Perhaps, instead, the long hospital stay worsened her pre-existing symptoms, and her lack of social supports further worsened her symptoms. Most people would never act in the way she did, even if they were in hospital for years, buts its very likely she might have been more “normal†if she had never been in hospital. But perhaps she might have preferred to believe this, rather than believe she had a disability, especially as both ways would have allowed her to get appropriate help when she needed it.Â
Bart Janssen wrote on February 26th, 2009 at 10:35 am:
In my work I read a reasonable amount of the increasing literature on identifying the genetic basis for AS.
Part of the interest is scientific, human genetics is really interesting and the methods scientists are using to uncover relationships between genes and phenotype (be it a disease or another trait) are important in my own work. But a part of the interest comes from knowing of Russell Brown’s family. Which creates a personal interest.
For me as a scientist the expectation is that diagnosis of AS will in the end be pretty straightforward from a genetic sense. And immensely complex from a personal sense. It will be easy at some point in the next 10-20 years to give a probability that a child will have some degree of autism, even perhaps possible to differentiate between kinds of behaviour that are likely. However what that statistical statement will mean for the person that child grows up to be and what that will mean for the parents and siblings is unclear.
I can understand why being labelled with a diagnosis may not be helpful. The very label can change the way the person behaves and more importantly how they are treated. But equally foreknowledge of likely difficulties, for example in school, may make the whole school experience easier for the individual involved.
It seems to me that it will take a great deal of care on the part of clinicians to get the balance right and to make sure each patient is assessed as an individual. It does not seem to me to be an easy task.
For adults who have already adapted to their own strengths and weaknesses, I just don’t know if an after-the-fact diagnosis means much.
Sarah Abrahamson wrote on March 11th, 2009 at 2:13 am:
Hi Bart:
Thanks for the reply. It is a difficult balancing act. People with developmental disabilities have traditionally been discriminated against and laughed at (for evidence of this, see my blog: lots of comedy characters with clear disabilities!) So it is possible that many people with disabilities of all types might want to resist the idea and appear “normal” to avoid this. In addition, I don’t know if society is open-minded enough to help people who disclose subtle disabilities, or if this will mean discrimination and condescention.
As for genetics: I don’t have a lot of faith that genetics will help clinicians practically: I believe that there are many genes contributing to autism which are common in some populations (especially Northern Europeans), which will not be predictable in their effect, and the combinations will not be predictable in their possible outcome. Instead the phenotype is what needs to be treated. However, specific genes, such as the dopamine and serotonin receptors, may help target therapy, especially for people with ADHD, anxiety and depression in ASDs. What sort of work are you doing in genetics?
Bart Janssen wrote on March 11th, 2009 at 2:37 pm:
Hi Sarah
Your first point I agree with entirely, discrimination is real and incredibly damaging. At the moment the only way to avoid discrimination is to “hide”. I have hope that as we mature culturally we become more tolerant and accepting. Things do seem to improve, albeit slowly and never fast enough for the children of today. As I’ve grown older I’ve seen tremendous change for the good in the way we, as a society, deal with or help people who struggle (for any reason) with the world we have created.
Is it reasonable to ask people today to choose to be open in the hope that society will treat them with care and respect? That would seem to me to be a personal choice for the individual. I can’t protect them from casual discrimination, I can’t even be sure I won’t do the wrong thing myself. I do think though that society can’t learn, and nor can I learn how best to help without open honest contact.
We do have people working really hard to figure out how to allow people with brains that aren’t average to integrate or perhaps even excel in society. At some point surely the help the society can give should outweigh the harm that discrimination can do?
Regarding genetics I disagree. Genetics has revealed some amazingly complex systems. But the people working on understanding those systems are also pretty amazing. I don’t for a second expect to see an “autism gene”. But I also don’t believe that the regulation of the development that results sometimes in autism is beyond our ability to understand. We will be surprised and we will discover yet more regulation of development. But I really do think in 10 years we’ll be able to name the most important genes involved in autism and not all but most people on the autism spectrum will show some variation in those genes.
Autism is clearly a multigenic trait and as a result will be complex and hard to diagnose accurately. But even with the tools available today we can unravel really complex biological systems. There is a difference between complex and impossible and I guess I have seen enough impossibly complex systems unravelled to believe autism will be too.
I think you’re also right that it’s incredibly important to treat the phenotype, especially at the moment when we don’t understand the mechanism. Genetics hasn’t really reached clinicians yet at all. And as for how it will help practically, that will need huge effort from both clinicians and the scientists. But it will help, because both the clinicians and the scientists want to help the patients, why else would they work that hard?
My work? I study the regulation of branch outgrowth in plants. Trying to answer a question you probably have never asked, which is why do plants produce branches when and where they do? We use all sorts of tools, including genetics and molecular biology. It’s good interesting science and I think even economically valuable.
Alyson Bradley wrote on March 14th, 2009 at 3:47 pm:
Hi Sarah
I know you know my thoughts on this and so you know I speak as someone discovering self later in life, I found Aspergers which is just one of my neurological differences, I have as many weaknesses as strengths and see my self as differently able and to me its not about being diagnosed or the label so much as being able to understand self and coming to understand my symptoms, differences.
First I would like to say I know many people diagnosed with ASD like myself later in life and none of them have regards, all only wish they had know sooner, as without knowing certain things that may not work in our lives, hard to change, hard to know how your actions impact upon others and often those closest to you. I have to ask does any professional have a right to keep life changing information from anyone. As not knowing well for me causecd so much damage, it was truly like living in the shawdows, I never quite fitted, never understood fully self and up until I was diagnoed never had the confidance to truly be…
I also feel if I hadn’t discovered Aspergers I would be continuing my life on an almost self distract button, no real sense of being or purpose. One of the most amazing things on my journey has been for the first time in my life I have found so many others like myself, who understand and I can relate to and no longer need to feel sub human. To not know to me would be like being imprisoned for the rest of my life, that invisible cage does exists… so if did not discover asd it would of been like with every step forward, the invisible cage would continue to hold me back… I guess its the difference from just existing or really existing. Young children may know no difference when very young but hurting them is wrong, has long term effects, the same I feel is to not diagnosing ASD adults or anyone on the autism spectrum, the longer ASD individuals continue to be in the dark about real self the more damage and harm long term I feel is inevitable.
I am not an expert and do not pretend to be, I can only tell my story and that is one of many… life is a choice for all of us, ASD was one of my better choices, discoveries in life. All I know I do not cry for no reason any more, there is no longer a deep sadden that just didn’t make sense, I no longer need to pretend I just am. But as for all of us what would any of our lives be like if we did not search, did not seek to find answers.
Being diagnosed with AS it was a HUGE relief, everything starting making made sense! And not only did it make sense, I was able to start dealing with things I never understood, or realized about myself before. To me no one has the right to keep someone else’s life on hold! Discrimination yes its very real and can be incredibly damaging, so its important more of us speak out and raise awareness and let others know its ok to be differently able, a diagnosis has to be an individuals choice, but they should at least have that choice.
Bart I agree “Autism is clearly a multigenic trait” and like the universe no real answers, but does there have to be!
Aspergers Paralllel Planet – http://www.asplanet.info
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