Hi,
I am a doctoral student in a clinical psychology program and I am very interested in autism. My experiences working with children/adolescents with autism spectrum disorders and their families have impacted both my research and career goals substantially.
I found this site through a posting on fark about autism speaks (AS). As I checked out your board, I noticed that many members here are suspicious of mental health professionals, professional opinions, and AS.
I would like to know what I (as a mental health professional) could do to make clients with suspicions, such as those posted on this board, more comfortable with utilizing mental health resources.
At a minimum, I think everyone deserves access to someone who can help them clarify whether or not they have a mental disorder and would benefit from treatment. While I agree with the views posted on this board that treatment is not always necessary and can be undesirable, I fear the internet leads people to "go it alone" sometimes when reliable and useful resources are nearby and accessible.
(To clarify, I do diagnose and assess but do not currently provide medications or treatment for ASDs. And just in case it pops up, I will not provide professional opinions over the internet. I am in the graduate school grind right now so I may take time responding to postings but I will do my best.)
Thanks,
Josh
Hi EvilZakkie,
Thanks for the response. I can definitely understand the argument presented against a "cure" though I don't necessarily agree with it.
I guess what really piqued my interest is the number of posters who self diagnose and don't seek clarification or confirmation. I am aware the internet provides so much info that it seems like one can safely self-diagnose but I am left wondering why individuals with concerns regarding potential disorders do not seek opinions from mental health professionals. Additionally, it seems like many posters are skeptical of diagnoses they receive from professionals.
Thanks again,
Josh
Hi MomofHrick,
Please excuse my use of technical terms, I don't get to do much nontechnical writing nowadays. Since you brought it up, can you explain to me why posters on this board prefer terms like "autistic" and "aspie"? The reason I use terms like "mental disorder" or "individual with Asperger's disorder" is so that I identify relevant info without labeling the person as a diagnosis. The person always comes first.
Second, I sense some distrust in your statement regarding professionals (correct me if I am wrong). This is what I am ultimately trying to understand. I work with a number of professionals who are knowledgeable about ASDs and are willing to put their knowledge aside and follow the client's lead when they are having obvious difficulty understanding the client. As scientists, we also collaboratively set treatment goals with the client and monitor our progress so the client knows whether he or she is getting a quality product. When you speak of professionals are you referring to psychologists? counselors? psychiatrists? and are any professionals (generally) consistently more difficult to get in tune with?
Thanks for your help,
Josh
Hi everyone,
Thanks for the great replies. I appreciate all the unique perspectives presented.
I would like to respond to some individual posts that stand out to me. However, I am rushing to meet some obligations on the school front. I will reply as soon as possible.
Thanks,
Josh
Hello again,
Sorry for the delay and thanks again for all the replies.
I noticed a couple themes in the replies that I would like to address.
First, I noticed that some individuals who sought out help did not receive what they were looking for. Specifically, it sounded like they were not listened to. I am sorry to hear this but I want you to know that their are professionals out there that care. Listening is perhaps the most important skill of any mental health professional. Sadly, it is also one of the toughest skills to teach/learn.
Second, I really appreciated all the input I received regarding terminology. I have a feeling some of the terms I use are being misinterpreted (i.e., clients, product). I am willing to explain any why I use these terms if anyone is interested. However, for the sake of simplicity, I am willing to stop using them for now. Additionally, I want to thank EvilZakkie and Hrick for clarifying the term "aspies."
Thanks to everyone for helping me better understand the goals of this site and it's members.
Before I go, I do have to admit that I am still confused/concerned about the way self-diagnosis is portrayed here. I have noticed a number of threads with individuals tossing around psychiatric terms and asking others for advice regarding diagnoses. I respect the rights of individuals to seek out information on the internet and to identify with labels that seem to fit how they feel. Still, I would like to point out one important thing I have learned in my training; each individual sees the world, including themselves, through a filter that is composed of their thoughts, feelings, and memories. With this in mind, I would not even recommend for a diagnostician with years of experience to try and diagnose themselves.
Individuals should be very skeptical of taking diagnostic or treatment advice over the internet. Even online assessments can be misleading and incorrect. If you have any questions or concerns about how you are feeling I would suggest meeting with someone who has appropriate training.
Best,
Josh
Hi Featherways,
I agree with you that assessment for clarification should be an easier process and I assume at some point this will be a goal of clinicians specializing in certain areas. With this in mind, I appreciate your approach to looking into this and commend you on your efforts. This sounds like a dissertation topic if anyone is interested.
The AAA test you referenced appears to have good face validity. Still, it requires much work before it will be anything more than a research instrument (google "psychometrics" and "test construction" for more info). It appears to be clinician administered, which may not make it one of the simpler assessments you are calling for. Additionally, I believe the results obtained by individuals that self-administer this test are questionable if not useless (I know this sounds harsh but I am being honest).
I think it would be great if we could develop "solid" online diagnostic tests but I am still uncertain how we would control their use. Control is necessary to a large degree because individuals will take tests repeatedly, consult others/literature, share answers, etc.
Best,
Josh
It's why I'm pressing for a simpler assessment procedure based on the Cambridge AAA model for those who would like to 'know' rather than those who want to have medical/employment benefits or adaptations.
When taking this assessment, does one put a number in both
yes AND no
or
YES or NO
Why do they have both; its just confusing?
Do you mean on the front page where the other questions are? I think the professionals only put something in the box they want (either yes OR no, not both), but not entirely sure. It is a very confusing test set for non-professionals I think - it needs a lot of cleaning up and explaining and data-protecting if it were to be used by a wider selection of trained people for assessment (rather than diagnostic) means, I guess. But it's still the best I've seen in terms of what it asks the professionals to consider.
Hi Featherway,
To clarify, I was referring to self-administration of this test (AAA). In short, this appears to be an early version of a clinician-administered observational checklist. Self-administration goes against the design of the test. Beyond that, more research needs to be done on this instrument before one should even consider the results from a normal administration, which is why it is released online as a "research" test.
I am not speaking about all online tests, I examine tests individually and look at a number of factors before deciding whether to use them. This test just has some clear problems (for lack of a better word) from the start and changing the administration of the test does more harm than good.
As far as the second part of your question, I can definitely see the difficulty posed by individuals interested in getting a "clarification" diagnosis without meeting with a professional. I think it reflects poorly on our profession that we do not have appropriate instruments (that I know of) for this matter. This is why I think you have posed a great dissertation project for someone who is interested in this area.
On a side note, I would like to expand on my response but I am under a serious time crunch. I will get back to you as soon as possible either on the forum or PM.
Thanks,
Still, I would like to point out one important thing I have learned in my training; each individual sees the world, including themselves, through a filter that is composed of their thoughts, feelings, and memories. With this in mind, I would not even recommend for a diagnostician with years of experience to try and diagnose themselves.
Josh
I hope that people note that the term above, "each individual" includes 'diagnostitions.' That is why there are perceptive diognosticians in professional fields and lay fields as well as rotten ones.
Of course you're taught to believe your profession is the only capable diognostition. It is job security!
You never responded to my request for your familiarity with the term, "role release."
Hi everyone,
I had a feeling my response would not be popular and I think some of you may be misinterpreting what I am saying. So, I will try and clarify more.
To begin, I do not believe psychologists are the only capable diagnosticians. Training in psychometric theory, interview, and assessment techniques is vital, in my opinion, to understand the process of diagnosis. Still, this training can obtained outside of psychology.
As far as self-diagnosis, I came here partly because I noticed a large number of people speaking about self-diagnosis and looking for confirmation. This was confusing for me early on because I did not understand the concept of "Aspie." As I have learned more about this concept, I have developed a better understanding of self-diagnosis in this domain. For some, it sounds like a diagnosis (self-or other) would confirm some beliefs about oneself or explain the difficulty experienced in some areas. For others, it sounds like a diagnosis may help with certain tasks (e.g., school). Finally, it sounds like many here believe the diagnosis of Aspie or autistic is really just a description of a naturally occurring phenomena that should not be labeled as a disorder or given as a diagnosis.
With this in mind, I am still somewhat confused. If someone believes they are Aspie and does not want treatment or any type of benefits what is the benefit of assessment? The DSM-IV TR criteria give a "somewhat" reasonable, though negatively focused, description of what Aspies is. If that person wants to "confirm" that they are Aspies they can look at the criteria and say "yes, I experience this" or "no, this doesn't sound right." If that is not enough confirmation, you can come to someone like me and ask what I think. When someone comes to me and says "what do you think?" My answer is limited by the current state of psychology, the current methods of science, my bias, and my ability to "hear" them as well as what they are describing.
Mental health professionals, including myself, are by no means perfect. What I am doing is putting all my training, experience with (aspies and autistics as you say), and effort into answering this question as accurately as possible. This is why I call non-standard administrations of a research instrument invalid. The AAA is not designed in a way that will help an individual who wants independent confirmation of their "diagnosis." I am sorry about this and I will share the frustrations I hear here with other professionals so that they are aware of the need for instruments to fill the purpose. I am not sorry for calling it out though because I was being critical of the test not the desire of those who are attempting to use it. I would refer those who want to understand my position to google "psychometric theory" and "test development."
Again, I am in a time bind and will have to leave it at that. Before I go, I want to say that I am doing my best to listen to what everyone here has to say. This is difficult due to the way we are communicating (online and in text). Still, I get this feeling that very few of you are hearing my genuine openness and desire to listen to what you have to say.
Additionally, with the few "trolling posts" aside, I will leave if the consensus here is that I am no longer welcome. As well intentioned as I may be, my profession and training may in itself distance me from some of you based on our differing beliefs. If I am no longer welcome by some please state that specifically instead of attacking me. I have no intention of arguing on this forum and will not address attacks specifically.
Janet: I am not aware of role reversal and have been unable to find resources on it. PM me if you would like to talk about this further.
Thanks,
Josh
To clarify, current assessments are focused on the negative aspects of the disorder. They are made with individuals describing difficulties in mind. They will largely ignore personality traits and behavior that is not problematic. Some may find them useful in understanding their difficulties but this appears to go against the beliefs of those who argue that "aspies" are not a disorder.
To clarify, current assessments are focused on the negative aspects of "disorders". Another way of saying this is that hey are made with individuals describing difficulties in mind. They will largely ignore personality traits and behavior that is not problematic. Some may find them useful in understanding their difficulties but this appears to go against the beliefs of those who argue that "aspies" are not a disorder.
Erkolos: I am eager to learn and will continue to listen as long as I am welcome. It appears my training and profession may run counter to the views of some on this board though.
I was actually referring to most assessment tools but diagnoses emphasize difficulties individuals experience as well, unless you include personality disorders.
With this in mind, I have some trouble understanding your view. Psychologists diagnose and assess primarily to clarify difficulties individuals have and to develop treatment plans to help the person address those difficulties. Whether we are identifying "true disorders" is up for debate.
In the case of Asperger's, I will mostly give individuals a diagnosis of AS if I believe their difficulties are caused by AS. In situations like this I am treating AS as a "disorder". Diagnosis is defined as: the art or act of identifying a disease from its signs and symptoms (Merriam Webster). My confusion is caused by some statements you are making specifically, "I don't view AS as a disorder" but "AS can help provide you with a framework for understanding where the problems come from and how to treat them [summary]."
If I consider the first part of this statement, "AS can help provide you with a framework for understanding where the problems come from." I am treating AS as a "disorder" because I am saying it caused problems whether directly or indirectly.
With regards to the second part of the statement, I can see how individuals can have AS and unrelated problems. In this situation, I would definitely recommend for the treating clinician to use their knowledge of AS to modify symptom treatment. Making a diagnosis of AS in this situation, on the other hand, would not seem appropriate. I would tell the individual asking me whether I thought they met criteria for AS if they asked but I would be puzzled if they asked for a diagnosis since they were not experiencing problems related to AS.
One thing that I don't think I stressed enough is that my emphasis is on diagnosis and assessment not treatment. It may be that my position and training is directly opposed to some of the views on this board because my work primarily involves those who believe their AS is causing a problem. I appreciate that those on this board are willing to give me the opposing view that they like some of the elements commonly associated with AS.
Erkolos: I am eager to learn and will continue to listen as long as I am welcome. It appears my training and profession may run counter to the views of some on this board though.
It's OK Jos, stick around. I think just about every member of this board has been personally attacked by other members of this board at some point. We never all agree on everything. Personally, I try to be rational when discussing my differences with someone, but not everyone here shares that philosophy, either. The best thing to do is just ignore them. I have been here for years now, and even after some pretty vicious attacks I still came back. The rest of what goes on here is what makes it worthwhile.
To clarify, current assessments are focused on the negative aspects of "disorders". Another way of saying this is that hey are made with individuals describing difficulties in mind. They will largely ignore personality traits and behavior that is not problematic. Some may find them useful in understanding their difficulties but this appears to go against the beliefs of those who argue that "aspies" are not a disorder.
Sometimes I need things rephrased in order to understand them. Is what you're saying here essentially "If you don't think it's a disorder, a diagnosis won't benefit you because it only focusses on faults"?
If so, I think I have to disagree. I don't view AS as a disorder- but I don't think it's all sunshine and roses, either. We have problems, of course, and an experienced diagnostician can recognize those problems and help with them. If someone comes to you because they're lonely, you don't claim you can't help because "loneliness is not a disorder", you provide help for the problem they are experiencing. It's the same way with AS, except that AS is a collection of positive and negative traits that together can provide you with a framework for understanding where the problem(s) the person is experiencing come from and how to approach them. For example, loneliness again, except now the person coming to you about it is also diagnosed with AS. Knowing that, you know you are going to need to use different methods to solve the problem the person is experiencing.
And if someone comes to you and says they want a diagnosis but they don't need any kind of help or treatment, then probably they just want answers- or they are only interested in knowing so they can solve their own problems, or understand their past better, etc. Look at it this way: If they are coming to you for a diagnosis, then there must be some reason for it! Otherwise, why would they bother? And if you want to know what that reason is, you're just going to have to ask them and then listen to what they say.
Well, once I became convinced of having Asperger's, I would have kept going to health professionals until I found one who could/would give me an official diagnosis. It was that important to my family and myself that I get some answers to the questions that plagued me since childhood.
I think this may say more about the world we live in than you.
I am intepreting your statement to say you felt isolated by your differences and the offical dx gave credibility to your uniquness
Yes indeed! Got it in one!
I must take some issue with Jos's idea that a treatment plan will always be a good follow on from official diagnosis. The reason is we can't be cured and doesn't "treatment" generally suggest aiming for a cure?
Unfortunately, previous therapists have got impatient with me because I only seem to improve while there is a fair amount of support eg. if they act as an intermediary with other health professionals etc.
They also had issues with the "slowness" in improvement and the fact that I would "get better" for a while and then go downhill very fast after seemingly minor setbacks.
Whether or not it is seen as special pleading, I consider an official diagnosis was necessary so that I could receive a few concessions in the workplace (ie. minimal phone and face to face public contact). This is because I easily get into a flap and can sometimes even self-harm when phone calls and face to face encounters go wrong.
This is very distressing to the people around me and to myself. I've tried things like assertiveness training and this has helped somewhat but what happens when the other person turns even nastier when I act assertively? I can't seem to cope with this kind of fall-out most times.
The impairments are subtle but pervasive and mean that things such as getting a prescription filled, making a doctor's appointment, getting medical tests done, arranging to have a handy person come and fix something broken; even getting a meal at a restaurant or going to the shops can become a nightmarish experience.
I fully realise that some of these things are simply unavoidable and I just have to manage the best I can. There is no cure and I accept that. Sometimes I would just like a sympathetic ear rather than somebody jumping in with solutions. Unfortunately, psychologists and counsellors are trained to jump in with "fixes".
I found they assumed they were dealing with an NT person who just needed a little prod to get her going and they didn't believe me when I said I couldn't follow their suggestions to the letter. I wasn't saying that to be difficult - I was telling the truth but they didn't want to hear it.
Jos, I think you'd need to be prepared for clients such as Batman, Ethel, and me who are definitely "gun-shy" about the helping professions, are intelligent and perhaps even oppositional and defiant if we believe we are being patronised and/or not listened to.
We could be either your most challenging type of client or your most rewarding - not because there will be some miracle cure but because we blossom if we know somebody believes in us.
I am very disappointed to see that you are trained to believe that Asperger's is a disorder only. That in itself will make it so much harder for you to see our potential and our special abilities as well as the areas where we struggle.
vocabulry is difficult. One person sent some amusing deffinitions of some of my vocabulry (interventions) from the devils dictionary.
When someone identifies themselves or thier child as having difficulties in a profession setting to a professional, that professional is obligated to respond in some way.
A plan of addressing the difficulties identified is a typical reaction. I am a big planner (obsessively so). I call it intervention, Jos calls it a treatment plan. both have been objected to.
What words would feel appropriate for someone who is seeking this assisstance?
I don't know but what I'm saying is I don't want treatment. I'm not defective or broken. It's only that because of some of the communication impairments I have, I need some practical assistance.
This is likely always to be the case. It's not appropriate for them to ever think they can cure me.
Professionals are no more than electicians or plumbers, they work for you.
They may want others to think they are holier than thou, but they aint!!
A plan that is not made by the person seeking help, is worthless.
A "professional" is there to ask the right questions and to provide a broader, deeper, more perceptive list of suggestions because they have spent extra time specializing in the specific area you sought help in.
There is something wrong if you feel that you've given control to someone, EVEN IF THAT IS YOUR PREFERENCE.