What are your views of self diagnosis?

[artfull dodger]

I feel its a good starting point(to self diagnose), it is then a personal choice whether to make it official(if possible). I can say that being professionaly diagnosed in the USA has little in the way of support at the moment, I have managed to get some assistance due to having a diagnosis. One is some help thru the state's Vocational Rehab job assistance program(just starting this program, so my opinion on the program is still forming), and when my wife was in the hospital ICU for 2 months, I got more personal assistance from the social worker due to being diagnosed. She was checking on me either in person when I was in her room, or she would text my cell phone to see if I needed any assistance at home with anything. This helped me feel safer after being thrown into chaos by my wife's medical emergency. Working with my therapist back when I was seeing her on a weekly basis was a god send, I was a hot mess before my diagnosis, with very poor coping skills to none at all. While that cost $$, the benefits are priceless. Yes insurance coverage sucks in the USA, looks to be worse in the future at the moment. But I know without a doubt where I am on the spectrum, what my struggles are and what I need to try to do in order to live life the best I can. Mike

 

[Dadwith2Autisticsons]

On the other hand, if I didn't believe in self-diagnosis, I'd be in a psychiatric hospital.. suffering from something they don't know how to treat, with a very bleak future.

My midlife Aspie meltdown was destroying my body, too; just at a slower pace. I was so exhausted I would have to cluster all my easiest work tasks to be done after 2 pm. And if that didn't work, I would have to drive myself to get things done; and the food and laundry and such... Mr WereBear has a chronic illness too, so we were in terrible shape.

Because I kept going to doctors, and they kept not figuring it out.

I don't want to hear "oh it's a rare issue" and the like. So what? Figuring stuff out is supposed to be their job. And yet only my GP was sympathetic. He ran a ton of tests and finally told me it "must be a stress issue." Which he was actually right about, to give him credit.

All the specialists I saw took one shot at the most likely culprit. When I tested negative for whatever that was, they wanted me to take Prozac and go away.

If I hadn't kept at my own attempts to figure it out, it never would have been figured out and I would never have improved and my mind would have broken under the strain and everyone would have said, "So sad she had a nervous breakdown" and I'd be in a psychiatric facility taking drugs that don't work for me and create more problems.

Just sitting back and trusting doctors would have ruined my life.

On the other hand, if I didn't believe in self-diagnosis, I'd be in a psychiatric hospital.. suffering from something they don't know how to treat, with a very bleak future.

My midlife Aspie meltdown was destroying my body, too; just at a slower pace. I was so exhausted I would have to cluster all my easiest work tasks to be done after 2 pm. And if that didn't work, I would have to drive myself to get things done; and the food and laundry and such... Mr WereBear has a chronic illness too, so we were in terrible shape.

Because I kept going to doctors, and they kept not figuring it out.

I don't want to hear "oh it's a rare issue" and the like. So what? Figuring stuff out is supposed to be their job. And yet only my GP was sympathetic. He ran a ton of tests and finally told me it "must be a stress issue." Which he was actually right about, to give him credit.

All the specialists I saw took one shot at the most likely culprit. When I tested negative for whatever that was, they wanted me to take Prozac and go away.

If I hadn't kept at my own attempts to figure it out, it never would have been figured out and I would never have improved and my mind would have broken under the strain and everyone would have said, "So sad she had a nervous breakdown" and I'd be in a psychiatric facility taking drugs that don't work for me and create more problems.

Just sitting back and trusting doctors would have ruined my life.

I feel you are 100% correct, as this exactly happened with my wife for 25 years. She did not self-diagnose then, nor could she then at that time of her life and in that traumatic environment where she then lived, so the result was being hospitalized over and over again with all types of drugs put in her, causing severe life/threatening side effects and symptoms, from all those misdiagnoses and wrong treatments.

Her condition only deteriorated from these 38 medical service "professionals" that she saw since age eight. She received a total of about seventy different treatments all those years, with those doctors thinking they knew everything, or not caring of the actual diagnosis but just to treat symptoms. They never got to the real routes of her issues, as they assumed it was just severe depression and anxiety, or some stereotyped women bipolar or borderline condition.

Had she self-diagnosed early on she could have avoided that condition flaring and deterioration from all those medical wrongs. Even I, who analyzes everything, and usually is one step ahead of most persons and who questions most things, for the first ten years of our marriage I wrongly assumed at least one doctor must be right in one of those four diagnoses she was given over a lifetime. I will never make that mistake again in assuming one's credentials or quantity of diagnoses given meant the truth.

Only the last year did I resort to researching other conditions, based on my wife's lifetime signs and symptoms never having been improved. I threw out any major depression type condition though, despite her having severe depression growing up, as she never had depressive issues living with me for ten years, after leaving her parent. I researched the DSM, and every condition listed, and one condition mentioned there explained everything. It was ADHD, and when I showed my wife I thought she had that, she said it all made sense now, as that was definitely her.

Needless to say, after a psychologist did all the extensive neuropsychological testing to check for what my wife had, looking at all possibilities, from various and numerous testings, we were not shocked at him verifying that ADHD and stating she had a severe such condition, with him saying many of her past problems could have been prevented or greatly reduced with proper medical care. Only through our not giving up, and proactive attempts to research and diagnose herself first did this bring much relief and resolution.

The formal diagnosis was just the icing on the cake, so as any future doctors or service persons would lay off in trying to treat the wrong thing. My wife is so much healthier now from the peace in understanding more about herself and her condition, and in feeling more in control to decide what is best for her to help, like in terms of art therapy or whatever else she decides to focus more, relax more, or to be herself more without worry she must be crazy to be acting that way. So, of course I support others researching things too, or being very proactive until heard.

 

[Professori]

Take a trip to WrongPlanet and find out.

As for professionals, of course there infallabilities, nothing is perfect.

All I'm saying is, do try for a professional diagnosis in the first instance instead of taking some online test and declaring yourself something.

If you want to believe all you read online, carry on.

Sure, but I have serious reservations about certain websites. I believe very little of what I find online. Essentially, I am in agreement with your point about professional diagnosis, and know that there are real dangers to self-diagnosis. The bottom-me is that self-diagnosis does not help the individual.

However, there are real cases of those who just cannot submit themselves to the diagnostic process. Personally, I think that if people willingly take on the label of autism because it is trendy then clearly they do understand much about it and certainly do not experience the pain involved.

 

[When In Rome]

Sure, but I have serious reservations about certain websites. I believe very little of what I find online. Essentially, I am in agreement with your point about professional diagnosis, and know that there are real dangers to self-diagnosis. The bottom-me is that self-diagnosis does not help the individual.

However, there are real cases of those who just cannot submit themselves to the diagnostic process. Personally, I think that if people willingly take on the label of autism because it is trendy then clearly they do understand much about it and certainly do not experience the pain involved.

Yes I think we are on the same page on this mostly and I certainly absorb your second paragraph.

 

[ksheehan88]

For me, self diagnosis is not enough. I need to be told by someone who knows what they are doing, who is qualified in these things else it feels like I'm being fraudulent.

That is not to say that others cannot self diagnose and be correct - I'm certain I have AS, I just need verification.

 

[Judge]

Having been in this community for a number of years, I've never lost sight of a simple dynamic. That it would seem that by far in most cases, those who suspect themselves of being on the spectrum went on to confirm it.

Consequently I see no point in making any serious distinctions between those who have a formal diagnosis, and those who don't. While most if not all of us dread and detest the notion of someone pretending to be on the spectrum for whatever twisted reasons, it doesn't seem to be anything omnipresent in this online community.

The reality is that it's your own instincts which will serve you best. Not an exclusive ability of a qualified medical professional to initiate much of anything. It's ultimately a matter of what compels and motivates one to seek such a diagnosis. For some it will be simple edification. For others, perhaps a path to legally obtaining a government entitlement if you qualify for it.

If a formal diagnosis gives you a personal sense of validation for whatever reasons, that's fine. However it doesn't entitle anyone to discriminate against those who haven't been through such a diagnostic process.

IMO this must remain a personal decision, and not something ever motivated by elitist peer pressure of any kind.

 

[Dadwith2Autisticsons]

Sure, but I have serious reservations about certain websites. I believe very little of what I find online. Essentially, I am in agreement with your point about professional diagnosis, and know that there are real dangers to self-diagnosis. The bottom-me is that self-diagnosis does not help the individual.

However, there are real cases of those who just cannot submit themselves to the diagnostic process. Personally, I think that if people willingly take on the label of autism because it is trendy then clearly they do understand much about it and certainly do not experience the pain involved.

I find that many websites do a pretty fair job of explaining things accurately. They may not be perfect, but if you combine information from several sites one can get a clearer picture. I rather read many of those sites, than a doctor report with technical words and clinical language.

Very few would want to be labeled as having Autism or Aspergers if they did not have it. And, I do disagree with the statement that "self diagnosis does not help the individual." That is disrespecting all those that posted that said it helped them in some way. They would certainly know more.

 

[WereBear]

Having been in this community for a number of years, I've never lost sight of a simple dynamic. That it would seem that by far in most cases, those who suspect themselves of being on the spectrum went on to confirm it.

Very few would want to be labeled as having Autism or Aspergers if they did not have it. And, I do disagree with the statement that "self diagnosis does not help the individual." That is disrespecting all those that posted that said it helped them in some way. They would certainly know more.

Agree agree agree. This isn't "yup, broken leg" in some clear and obvious way. This isn't a condition like Addison's disease where you need replacement hormones or you die. This is a situation where most "experts" haven't been trained properly and also haven't kept up with the latest. Relying on them exclusively would be as foolish as grabbing some random college students to sail in your boat race, because you've decided that you can just "tell them what to do."

I am one of those people who is kind of a hybrid: by the time I was an adult, I had managed enough coping skills that no one, including myself, had the slightest suspicion I was actually an Aspie. Can't stand that razor edged tag on the bag of my neck? All the ladies around me would agree. But what got missed was that they just put up with it, while I was in the ladies with a pair of scissors getting that #(*%^) tag off my clothing at all costs.

In my teens I was easily worn out because I was living in a dangerous and chaotic situation. In my twenties I was worn out because I was still recovering from my teens. In my thirties I managed to work at home for ten years and no one could tell anything was wrong with me.

It took the upheaval of a crisis menopause to crash me, and then I spent years searching for an answer.

So much for expertise. It's thin on the ground, people.

 

[Professori]

I find that many websites do a pretty fair job of explaining things accurately. They may not be perfect, but if you combine information from several sites one can get a clearer picture. I rather read many of those sites, than a doctor report with technical words and clinical language.

Very few would want to be labeled as having Autism or Aspergers if they did not have it. And, I do disagree with the statement that "self diagnosis does not help the individual." That is disrespecting all those that posted that said it helped them in some way. They would certainly know more.

Well, it seems that there is disagreement on the issue of websites because the claim was made to the contrary regarding those who want to be known as autistic, and so self-diagnose. I have stated that I feel that anyone who thinks autism is trendy and thus self-diagnoses knows very little about it, especially the hardship and pain that Is involved.

I still prefer to view websites with caution. For example, those that provide self-diagnostic tests warn that they are in fact not diagnostic, but rather give some insight. They are thus warning to take caution. Some are genuinely trivial.

I disrespect nobody who self-diagnoses, and is really genuine about the reality of the problems involved, as you will see in my previous posts where I have defended those who have done so. It is difficult to explain every comment one makes, but what I mean is that self-diagnosis does not help in the sense of providing any assistance which may otherwise be provided with an official diagnosis.

I did not understand much about my own difficulties until later in life and then stumbled onto a self-diagnostic process with tests and began to understand. Personally, I struggle a great deal with my own condition, not because of the 'label' but because of what I have experienced within myself, and the fact that I clearly 'march to the best of a different drum' - and that is not an idle claim.

 

[Sabrina]

Well, since there's a forum about diagnoses, and I haven't been diagnosed, I paid last night for an online test (unconclusive, it says, always go to your health practician). It says I'm either Borderline Asperger or High Functioning Asperger.

I also would like to share an anecdote. Like two years ago, my kids' school was giving a talk about Aspeger's and I went, out of curiosity. I always thought that all aspies were like Sheldon Cooper, and I was sure I had met my share of them. I also suspected that my dad had it.

Now, imagine my surprise when the speaker starts naming all the characteristics of people with Aspergers, and I realize, that yes, my dad is a very good candidate for that diagnosis, but also me, my husband and my two kids!

I talked with my husband about this, and he was actually happy. You know, the tipical AHA! Moment.

In my case I was shocked. Why? Because like five years before that talk, I had started a personal crusade to see who I really was, since I felt that I was not being authentic. The result was beautiful and I was proud of it: I'm an introverted person that loves to write, read and travel. I'm very compassionate, mostly of kids and nature in general. I'm a person that loves her inner world so much, that sometimes, I prefer to just be there, in my world. I prefer to work alone than in groups (by far). I love fantasy and literature. Yes, I'm absent minded sometimes (or have attention deficit disorder) but I've made a huge effort to overcome that, and I'm a lot better now. As long as I can keep my levels of stress low, I rarely forget things (if I start been too anxious, it's the opposite). I do not process what people tell me instantly, it takes me a few seconds, and sometimes I connect the dots after days. That's why I prefer information in writing. I am challenged regarding coordination. If I multitask, I always mess up something, so it's better for me to stay at one thing. And when I do stay at one thing, and I love it, my concentration is such, that I am not aware of what happens around me (that's why I cannot work and watch the kids at the same time) and so
on.
I was so proud of how unique I was. And then I start googling "female aspies" and there there is, MY description of me, the one that I "fought" for.
Well, that happened two years ago and now I can
just laugh.
I commented all this to my therapist back then, and he just said that he didn't think I had AS
and that in any case, he didn't believe in labels.
Just recently I brought it up again, this time to our couples' therapist, and she started reciting regular autism symptoms (it appeared to me that she just didn't know about Asperger's), so I left it at that.
Now, please understand: my case is mild from what I can see, and so is my kids' (my husband's not so much) and I don't want labels for me or my kids. Why? Because I live in a place, where people will use it against us, not to help us. For me it's enough with all the "innocent" jokes that I'd had to endure all my life. I can just imagine the same people saying: "See? There is something wrong with you", when in reality there isn't anything wrong with me. It's just that some people don't realize that words can actually hurt and that it's just not correct to make fun of someone just because that person is different.
Anyway, I cannot come out of the aspie closet. Maybe in the future, if I meet more educated people on the subject.
Well, thank you for reading, this was a load off.

 

[WereBear]

I was so proud of how unique I was. And then I start googling "female aspies" and there there is, MY description of me, the one that I "fought" for.

Gosh, me, too!

But, like you, I grew to embrace it.

 

[JoyChaos]

I think self diagnosing is a good first step. when i was 16 years old i diagnosed myself with type1 diabetes. I was right btw but in strong denial. a week later after suffering i went to the doctor and i expect her to know her ****, she diagnosed me with MONO of all things and gave me a mouth ointment. I could of actually died and i trusted her since she was licensed. needless to say i went to the hospital where the diagnosis i thought of to explain my symptoms was confirmed.


I'm saying if the shoe fits its a good idea to go in and get it confirmed. but in the meantime a self diagnosis is completely fine.

maybe i am wrong about myself. Perhaps i do have a mood disorder. I really doubt depression or anxiety(which have been diagnosed to me by GP mind you) fit whats going on with me. I know myself enough to say its something more. I will find out someday soon. But till think i will have my ambiguous self diagnosis.

 

[WildCat]

Take note: I'm not calling anyone out here, if you know yourself to be on the spectrum and/or have been diagnosed by a professional then disregard this, but there's nothing more that absolutely pisses me off more than people who like to live lies. I'm not talking just those who have no business whatsoever carrying around the label of autism or Asperger's either. Yes, these people do exist, and the internet is THE perfect breeding ground. Why? Why not? The information's right there at your fingertips, nobody gets to see you in the flesh, plenty of opportunities to use it to your advantage, and more.

I didn't and don't need self-diagnosis - the signs were there at an early age, textbook example - and if there's one thing I've never done in this life, it's using autism as an excuse or pass for anything. No, I'm not proud to have it, it's not a shiny badge, and it certainly doesn't define me - it's something I'm going to have to live with, work around, and (if I get lucky) possibly tap into for the benefit of society. OK, so the last one hasn't happened yet (sort of), but if or when it does happen I really don't have to prove anything to anyone. They can find out and judge for themselves.

I hope these people, some of whom are perfectly functional, high-achieving and otherwise able to navigate the world with ease, can see the damage they're doing to those who do struggle (assuming they even care, and they probably don't), those who have to put up with crap from everyone else because they can't help their neurology, and those who just can't seem to make a modest living or even survive due to being at a disadvantage by default.

 

[Fridgemagnetman]

Having been in this community for a number of years, I've never lost sight of a simple dynamic. That it would seem that by far in most cases, those who suspect themselves of being on the spectrum went on to confirm it.

Consequently I see no point in making any serious distinctions between those who have a formal diagnosis, and those who don't. While most if not all of us dread and detest the notion of someone pretending to be on the spectrum for whatever twisted reasons, it doesn't seem to be anything omnipresent in this online community.

The reality is that it's your own instincts which will serve you best. Not an exclusive ability of a qualified medical professional to initiate much of anything. It's ultimately a matter of what compels and motivates one to seek such a diagnosis. For some it will be simple edification. For others, perhaps a path to legally obtaining a government entitlement if you qualify for it.

If a formal diagnosis gives you a personal sense of validation for whatever reasons, that's fine. However it doesn't entitle anyone to discriminate against those who haven't been through such a diagnostic process.

IMO this must remain a personal decision, and not something ever motivated by elitist peer pressure of any kind.

Bipolar is more the celebrity thing at the moment, so perhaps all the nutters pretend to have that

Like you said - ask yourself does it help to think of yourself in that way?
If it does then go for it, your life will improve as you can sort of relax into yourself.

It can also be a disorder which can be very awkward when put in front of 'authority'. I'm very concerned of creating problems for myself in that area. As well as even worse social opprobrium.

So I'm relaxing 'into it' and I'm okay with that.

(Ten points for opprobrium, which may even be in the right context )

 

[Amy Susan Rose]

maybe i am wrong about myself. Perhaps i do have a mood disorder. I really doubt depression or anxiety(which have been diagnosed to me by GP mind you) fit whats going on with me. I know myself enough to say its something more. I will find out someday soon. But till think i will have my ambiguous self diagnosis.

You may be interested to know that Tony Attwood, a leading authority on Asperger Syndrome, sees those with Asperger Syndrome managing anxiety as an everyday part of their lives and subsequently some of these people go on to develop anxiety disorders, including social anxiety disorder. He suggests that current research shows that around 65% of adolescents with Asperger Syndrome have a secondary mood or affective disorder (such as depression or anxiety) (Attwood, 2006). Autism Spectrum Conditions & Anxiety Disorders | Asperger and Autism Training Consultants
Comorbidity is not uncommon for those of us on the Spectrum and can make it difficult for some physicians to pinpoint Aspergers if they are not experts in the field.

 

[Dadwith2Autisticsons]

Well, since there's a forum about diagnoses, and I haven't been diagnosed, I paid last night for an online test (unconclusive, it says, always go to your health practician). It says I'm either Borderline Asperger or High Functioning Asperger.

I also would like to share an anecdote. Like two years ago, my kids' school was giving a talk about Aspeger's and I went, out of curiosity. I always thought that all aspies were like Sheldon Cooper, and I was sure I had met my share of them. I also suspected that my dad had it.

Now, imagine my surprise when the speaker starts naming all the characteristics of people with Aspergers, and I realize, that yes, my dad is a very good candidate for that diagnosis, but also me, my husband and my two kids!

I talked with my husband about this, and he was actually happy. You know, the tipical AHA! Moment.

In my case I was shocked. Why? Because like five years before that talk, I had started a personal crusade to see who I really was, since I felt that I was not being authentic. The result was beautiful and I was proud of it: I'm an introverted person that loves to write, read and travel. I'm very compassionate, mostly of kids and nature in general. I'm a person that loves her inner world so much, that sometimes, I prefer to just be there, in my world. I prefer to work alone than in groups (by far). I love fantasy and literature. Yes, I'm absent minded sometimes (or have attention deficit disorder) but I've made a huge effort to overcome that, and I'm a lot better now. As long as I can keep my levels of stress low, I rarely forget things (if I start been too anxious, it's the opposite). I do not process what people tell me instantly, it takes me a few seconds, and sometimes I connect the dots after days. That's why I prefer information in writing. I am challenged regarding coordination. If I multitask, I always mess up something, so it's better for me to stay at one thing. And when I do stay at one thing, and I love it, my concentration is such, that I am not aware of what happens around me (that's why I cannot work and watch the kids at the same time) and so
on.
I was so proud of how unique I was. And then I start googling "female aspies" and there there is, MY description of me, the one that I "fought" for.
Well, that happened two years ago and now I can
just laugh.
I commented all this to my therapist back then, and he just said that he didn't think I had AS
and that in any case, he didn't believe in labels.
Just recently I brought it up again, this time to our couples' therapist, and she started reciting regular autism symptoms (it appeared to me that she just didn't know about Asperger's), so I left it at that.
Now, please understand: my case is mild from what I can see, and so is my kids' (my husband's not so much) and I don't want labels for me or my kids. Why? Because I live in a place, where people will use it against us, not to help us. For me it's enough with all the "innocent" jokes that I'd had to endure all my life. I can just imagine the same people saying: "See? There is something wrong with you", when in reality there isn't anything wrong with me. It's just that some people don't realize that words can actually hurt and that it's just not correct to make fun of someone just because that person is different.
Anyway, I cannot come out of the aspie closet. Maybe in the future, if I meet more educated people on the subject.
Well, thank you for reading, this was a load off.

Great post Sabrina. It's great you feel you have found what else you and your family may have, and that you are very fine about that. That is a great attitude to have, to be relieved and proud at the same time. I wish more felt the same, but I guess feelings and opinion can vary because of severity and uniqueness of each situation.

With regards to your situation, lot's might ask how can ADD and Asperger's Syndrome coexist? Actually, it's not too uncommon according to research that says 30 to 50% of those with ADHD have symptoms of Autism Spectrum Disorder. Our youngest nonverbal 5-year old son Dylan has both mild to moderate Autism Spectrum Disorder, and ADHD.

No, a doctor has not diagnosed ADHD in Dylan yet, but we are not about to wait until age six at earliest for them to put the obvious pieces together, if ever at all they would know how to test or diagnose one who is nonverbal and cannot follow any direction, and as these days doctors are very hesitant to diagnose ADHD when children are young.

Well, I can help explain further why I feel self-diagnosis at times can be important, and why we feel Dylan has ADHD in addition to his now diagnosed Autism, which by the way we too are not ashamed of, but are proud to say too because of that uniqueness. To start, Dylan does not walk at home, but runs and climbs in the home all day long, if not sitting with his hands moving at the iPad, jumping from activity to activity and wanting to multitask.

Dylan always seems to prefer disorganized things, and his rare babble is even very fast. My wife said when she first talked as a child, which was late at age four, her parents stated she began speaking sentences first, not words. Dylan will likely do the same, if he one day talks, as he is fast paced at everything he does. Combine this with the fact my wife now has confirmed diagnosed ADHD, and her father had the same signs and symptoms, it makes sense Dylan has that condition, in addition to the Autism.

But, as Dylan looks and acts closer to a one year old, in terms of size and development, does anyone think any doctor would want to diagnose ADHD in him, if we ever attempted such, and when 10-12 doctors could not diagnose Autism in him, at age three, when symptoms were there at 18 months, unless a rare great doctor with much curiosity and insight saw him. My educated guess based on past experiences would be that the evaluator would likely instead look at things superficially.

By this I mean, they'd likely say, "It's too early to diagnose him. He could grow out of it. He looks so young to evaluate. Look he is sitting in his stroller and just crying. We see no ADHD." Well, if we let him out of the stroller he would be running very quickly out the door, down the hallways, and climbing over whatever was in his way, including the doctor if he or she blocked his path, as if on a motor. But, if he was tall enough he would quickly mess up their hair first and giggle.

My advice to a doctor would also be how about looking at how he plays with his IPad, if he is still buckled in his seat for needed reason to keep him there. Is he impatiently and quickly wanting to go from one IPad app program to the other? Is he finishing any of the apps he starts? Does he seem to get distracted by things? Does he listen or respond to any commands? Give him a book, see what he does with it. Does he turn pages slowy and in order, or quickly flip through pages and out of sequence and wanting to jump around in the book. Is Dylan's hands or feet always wanting to move?

Remember, as great and educated as mental health many professionals can be, it is one thing to remember lots of facts, to pass lots of courses, and to seem theoretically smart, but lots of these persons may lack either common sense, practical skills, analytical abilities, emotional intelligence, or they may have biases, conditions or agendas of their own that conflict with giving proper care. Or they just follow their protocol. If they are presented with a unique situation, they may not know how to act. It is not in their manuals of remembered things or part of their practice to try those certain things.

This lack of ability to analyze or other motive is why they could not or would not diagnose Dylan with Autism either. 'Give it time. He could grow out of things" we were told. "Look at his smile, his eye contact. He has no strange features. That is not Autism" most likely thought. "He is just a picky eater and a late talker." Well, did you ask us further questions or screen or want to test further after you read what we wrote in advance about all the core symptoms being present?

Dylan was nonverbal still at age three, and he tolerated only three foods, vomiting at the sight of all others. He had severe difficulty sleeping. He had some rituals and atypical interests. Yes, one could argue that does not mean Autism. It could be anxiety related, OCD related, or whatever. But, they knew his older brother Aaron had Autism. You would think at least they
could put two and two together? To screen, test and analyze further.

There are obviously many wonderful mental health doctors out there, and each of our children have had a few out of the fifteen each who tried to go above and beyond what they had to do. Maybe their hands were tied though as well. The purpose of sharing our experiences is just to give an opposing side too, and to not assume a doctor will always be effective and efficient. In Aaron's case, diagnostics went very well. For Dylan, a horror story. I am not the type to exaggerate.

So, thanks Sabrina for sharing your situation and experiences. I related to the dual conditions, as Dylan had sort of the same. So, sorry it I went off on a tangent.

 

[JoyChaos]

You may be interested to know that Tony Attwood, a leading authority on Asperger Syndrome, sees those with Asperger Syndrome managing anxiety as an everyday part of their lives and subsequently some of these people go on to develop anxiety disorders, including social anxiety disorder. He suggests that current research shows that around 65% of adolescents with Asperger Syndrome have a secondary mood or affective disorder (such as depression or anxiety) (Attwood, 2006). Autism Spectrum Conditions & Anxiety Disorders | Asperger and Autism Training Consultants
Comorbidity is not uncommon for those of us on the Spectrum and can make it difficult for some physicians to pinpoint Aspergers if they are not experts in the field.

I never said the idea of comorbid conditions was out of the question. anxiety and depression are co-morbid with diabetes but beside my original point. i was meaning. people have told me there was no way i am autistic because i probably JUST have a mood disorder sorry i didnt clarify

 

[Lady Penelope]

What are your views on self diagnosing? Do you think that more can be done by professionals to recognise and provide more accessibility for people who suspect they might have a form of autism? Do you think that autism as a defined condition is in danger of becoming less significant because of a blurred perception of it? Or do you think that it's good to show that autism can be seen in seemingly allistic (non-autistic) individuals and therefore helps break the stereotype of certain perceptions of these conditions? And does a self-diagnosis carry the same weight of importance as an official diagnosis?

I have very much enjoyed reading the replies to this post.
It seems to have struck a chord and generated a healthy and respectful debate.

From what I have read about obtaining a diagnosis, it does seem that more needs to be done to afford individuals the opportunity to obtain a diagnosis. It also seems that there is not clear cut check list for diagnosis as the very nature of being on a 'spectrum' creates ambiguity in diagnosis made difficult by idiosyncracies amongst those thereon.

A 'blurred perception' is double-edged. On the one hand, increased awareness and reducing stigmas associated with mental / behavioural tendencies is a step forward to gaining community and individual acceptance. On the other hand, ill-informed and ignorant individuals will always brush off that which they do not understand and could (most likely) result in individuals being treated as though they have no issue to be addressed or made allowance for, and being pressured to conform to the societal norm as they have been and currently still are.

It does seem that almost everyone can be 'on the spectrum' in some form or another. More awareness could reduce the stigma and negative response from those who deem themselves to be 'typical'. Might be nice for everyone to acknowledge that the term 'individual' means more than just having an opinion and different dress sense. It also goes to the core of our being; DNA, neural-pathways, etc.

Self- diagnosis leads to the opportunity to access the information to assist. If that leads to formal diagnosis, then it's a good thing.
Formal diagnosis results in more awareness of how prevalent ASD is in the communities, gains more funding, more access to services for those on the spectrum who really need it. I think self-diagnosis helps the individual come to terms and accept who they are and able to address the areas they deem unsatisfactory, but not ASD as a whole.

I prefer the term 'un-diagnosed' to 'self-diagnosed'.

I am grateful that the 'un-diagnosed' can access the same tips and tricks as the 'formally diagnosed'. As an HFA currently in the process of formal diagnosis, I would not have looked into getting a formal diagnosis without having first been exposed to a site such as this to work though my thoughts. In addition, I'm not seeking formal diagnosis for any monetary benefit or access to services, and I suspect this would be true for a large number of the population who do not want to block up resources for those in more need. I just need a little help, support and some fresh ideas from time to time. The formal diagnosis is for peace of mind but I would be just as content being able to access a site like this and converse with like-minded people diagnosed or otherwise.

To each their own ... whatever works for one may not work for another. Identify what you need and go get it!

 

[Sashi]

I first suspected I was on the spectrum on my job as a substitute teacher's assistant which often put me in a classroom for autistic students. I'll never forget that moment when I was observing the behavior of a school student whose behavior was so much like my own that a light bulb went off in my head. It prompted me to do the on-line research and take the AQ test, RAADS-R, RDOS, etc. The on-line test results had the same results of my being highly likely autistic. During this time, I had my regular visit to my family doctor and confided in him. We went over the pros and cons of a professional diagnosis and it was decided not to pursue it. The medication I was on was helping me tremendously with anxiety issues. Since I was doing fine, I didn't pursue it and he didn't encourage it.

I receive constant affirmation from the children in the classroom who have ASD. Much of what I see them do in the classroom I do myself, whether in public or in private. I speak the same language with those on the spectrum whom I have been corresponding with since joining autism forums. If someone were to ask me how do I know I am on the spectrum, I would ask the to read the stories on my blog website. They aren't made up. I have lived those stories, and I still continue to do so. I have a choice about talking, writing, and praying about ASD, but I don't have a choice about living with it.

 

[Sabrina]

So, thanks Sabrina for sharing your situation and experiences. I related to the dual conditions, as Dylan had sort of the same. So, sorry it I went off on a tangent.[/QUOTE]