Is it worth pursuing a diagnosis?

[heartsl0b]

Hi all,

I'm new to the forum, and almost exclusively joined in order to get the opinion of people that have first hand experience of Aspergers/Autism.
I've been ruminating on the possibility of pursuing a diagnosis (or a ruling out) for Aspergers since reading an article lately on the experiences of females diagnosed later in life with HFA. Their stories very much resonated with me and prompted me (after years of people making Aspie jokes to me) to research it for myself and see if there was any leverage to the possibility.

Rather than write an entire essay, I've bullet-pointed some characteristics that I feel fit.
I'm curious as to whether anyone here, particularly if you've been diagnosed, can relate to them and feel it may be worth pursuing?

Childhood
- Meltdowns.
- Flapping.
- Refusal to wear waistbanded clothing or close fitting clothing.
- Preferred playing alone.
- Refusal to eat foods that had a weird texture or smell.
- Hyperlexic, also taught self to walk, to quote my mother "just got up one day and started walking."
- Struggled to assimilate to the move from pre-school to nursery school.

Adulthood/
Adolescence
- Often referred to as "overly blunt" or "insensitive" though I most definitely don't mean to be.
- Encyclopedic knowledge of various interests. E.G - GoT, LOTR, Psychiatric disorders, Serial Killers.
- Repetitively play the same video games over and over again, often repeating the same choices and actions.
- Tapping fingers, biting nails, bouncing leg, clicking teeth, rubbing face, chewing my cheek without even realising it.
- When interrupted during a task at work, I find it very difficult to get started again and sometimes respond with anger. Similarly if someone makes changes within the office. Major office changes have been catalysts to leaving jobs in the past.
- Hypersensitive to smells (heaven forbid my partner changes the washing powder!) and touch. Sometimes sensitive to noise if I'm in a very crowded place or the noise is extremely loud. Have a tendency to go almost mute if I get overwhelmed.
- I virtually never leave the house, I don't crave other people's company the way most people do. If I leave the house it's for a walk near the canal or because my partner is with me.
- Constantly analysing and observing people's behaviour, it helps me understand how to behave around them.

There are a few other things but it would take me a while to list them all.
I should state that I appear outwardly quite functional, hence my initial reluctance to explore this further. I realise that none other than a qualified professional can diagnose the syndrome, but I would hate to waste their time on what could be a total non-issue and just me being a bit quirky.

Any thoughts would be kindly appreciated

 

[Juliettaa]

Hello and welcome.

I am one of those females - diagnosed later in life after decades of knowing that I don't fit. Well, into the NT world that is; I fit perfectly fine in my own world

In my humble opinion and oh so very limited experience, from what you've posted you appear to fit the criteria.

Is it important for you to pursue a diagnosis? Not everyone does this, you can self identify/diagnose too. For me a diagnosis was important on a couple of levels - reasonable adjustments at work and also for my own peace of mind. The diagnosis has helped me enormously in terms of self acceptance and to stop berating myself to change who I am, how I respond, my diverse thought processes, sensory issues, meltdowns etc.

If you're in the UK, be prepared for a long wait if you're going to pursue the NHS route. I couldn't wait. Once I'd made my mind up, I went via the private route.

Hopefully more knowledgeable people will come along and give advice.

I hope you enjoy your time here.

 

[WereBear]

In my humble opinion, you probably are. Welcome! I went through a similar process, and it was a relief to me to realize, as my first thought was It explains so much.

If you are going to "think of yourself" that way, or have issues like fatigue or input handling, etc; it can be good to know you have these challenges so you can come up with better ways to handle them. It can even, as in my case, be life-saving.

Keep in mind that:

• A diagnosis is of varying help to someone in your situation. Understanding that this was the cause of my baffling collections of symptoms and constant negative results on medical tests helped me tremendously. I was about to have a cascade of auto-immune disorder/nervous breakdown/chronic fatigue diagnoses forced on me with horribly counter-productive treatment issued. My problem was essentially destroying me. Realizing I have Asperger's Syndrome let me create real strategies that dodged a tragic outcome, as my "mid-life Aspie meltdown" was triggered by a disastrous menopause situation and things kept getting grimmer and grimmer as medical science was of no help at all. When I diagnosed myself I was able to address my issues head-on.
• Getting my formal diagnosis was not nearly as helpful as everyone around me assumed. My insurance company wouldn't pay for the official diagnosis or the things like a weighted blanket or a mini-trampoline that actually helped. People on the Spectrum get help when they are young and have educational needs that are mandated for schools to handle. Undiagnosed adults are assumed to "be handling it" and you get ZERO; especially since "you've been coping" all this time.
• It doesn't help with work the way you might think it should. They still "accommodate" you on their whim. Telling people can open the door to complete ignorance and fierce prejudice. Now you aren't a bright and quirky feminist (which was me) you are a freak or you are lying for attention because "you don't look or act like someone with autism." I had to leverage my doctor's note for my medical condition (severe auto-immune issues) to get my work situation adjusted to something that wouldn't try to kill me. Had I shared my diagnosis it would have been baffling and "weird' and not helpful.
• How will the people close to you handle it? I have an advantage in that I've worked IT for my whole career, but other professions know far less about the Spectrum and there's not a lot of understanding and support.
• The key is that people who have already accepted your "quirky" ways will think it's another quirk, and if helps if they have the remotest understanding of what autism is; which isn't common. But if one of the first things a person learns is that you have Asperger's, that is going to color all of their perceptions moving forward, and that's when we get hit with "you're just robots with no feelings" and they start to treat you the way the ancients treated leprosy. I already have a hard time dealing with stupidity. This turns it up to 11.
• Science is of remarkably limited help, because they don't understand Low Functioning Autism in most ways, and they are completely clueless about High Functioning Autism. The current fad to prescribe powerful drugs for anything is going to work against most of us, as one good thing that came from my diagnosis was that psychiatric drugs would work against me, not for me (from my medical history, I am a non-responder) as my brain "adjusts" to them and all I get are side effects. It may or may not be true for you, but getting real "treatment" is not going to happen. Getting real help might or might not happen; I'm in an area where there is very little, I had to drive three hours and stay overnight to manage getting a professional diagnosis.

So it really is up to you about pursuing a diagnosis, or simply becoming comfortable with the idea and keep it to yourself. "I'm introverted!" or "I am a Highly Sensitive Person!" works for me, too; and I am those, as well. Getting a diagnosis is just a glimpse of what it's like to deal with medical and psychological professionals, and it's more frustrating than helpful for most of us.

That is why we recognize a sincere self-diagnosis as much as we do an official one

 

[heartsl0b]

Is it important for you to pursue a diagnosis? Not everyone does this, you can self identify/diagnose too. For me a diagnosis was important on a couple of levels - reasonable adjustments at work and also for my own peace of mind. The diagnosis has helped me enormously in terms of self acceptance and to stop berating myself to change who I am, how I respond, my diverse thought processes, sensory issues, meltdowns etc.

Thank you for your response!
My motivation is very similar. I'd (hopefully) like the knowledge that there is nothing "wrong" with me because I don't seem to be the same as other people, that maybe I just process the world in a different way.
As I'm getting older, I'm finding certain things increasingly difficult, especially in the workplace. For me, I think it would be helpful to be able to explain to people that I'm not deliberately trying to be rude or difficult, in fact quite the opposite. It's also for my partner's vindication, so they can be safe in the knowledge that if I don't want to be cuddled or touched, it is absolutely not because I don't love them or am no longer attracted to them, I'm just simply not able to handle that contact at that present time.

 

[heartsl0b]

So it really is up to you about pursuing a diagnosis, or simply becoming comfortable with the idea and keep it to yourself. "I'm introverted!" or "I am a Highly Sensitive Person!" works for me, too; and I am those, as well. Getting a diagnosis is just a glimpse of what it's like to deal with medical and psychological professionals, and it's more frustrating than helpful for most of us.

That is why we recognize a sincere self-diagnosis as much as we do an official one

Thanks, this was quite enlightening and helpful. I suppose I had never considered the possibility that a self-diagnosis could be just as valid!
I've discussed the possibility at length with my partner and my mother, who both think it could explain quite a lot of my behaviour past and present. I'm weary that maybe I'm reading too much into things and that I'm fabricating something from nothing as a way to comfort myself. I don't know if that makes sense at all?
I'm not so much interested in getting any help, I've got this far with none, just a deeper understanding of who I am for both myself and the people around me.

 

[Otenba]

If the possibility of being autistic is something that is possibly affecting your quality of life right now, then yes, diagnosis is very worth it because it is an invisible disability that you may need to get help with. In the majority of legal cases you being autistic will only be taken seriously if you have an official diagnosis.

Some people go through life being okay with not knowing, and that's fair enough/their choice, but clearly you're asking us here, right now, if others waiting assessment or already diagnosed if it's worth the trouble. You felt it was something you needed to know at some point and that is reason enough in my eyes. If you don't ask, you'll never know.

I too, as another woman waiting for an assessment, have experienced similar feelings of doubt, but it's always worth remembering why you started the process in the first place to give yourself the reassurance that it is worth the trouble again. I am doing it on a need to know basis because if I am autistic, it is definitely affecting my quality of life and I do not want to put up with the effects of not knowing any more. Many loved ones also think seeking it will be very worthwhile, which only strengthens my resolve.

The average assessment waiting time is two years in the UK. Hopefully you're in a good area in the NHS postcode lottery where you might get seen sooner.

Welcome to the forum!

 

[Mary Anne]

I would like an official diagnosis, but at a minimum of $3000 to $5000 it just is not EVER going to happen. So, I can tell folks if I choose to (which when I have it’s fallen on positively deaf clueless and uneducated ears (so to speak in metaphor), and so, my own personal knowledge will have to suffice. I am ok with that.
It’s astonishing, that even within the mental health world in which I was trained, and work, that there is a total lack of autism. Accommodations and education seem to be for those with schizophrenia, bi-polar, depression, OCD, anxiety, etc, while anything having to do with aspergers, or autism is left to those with specialized training and certifications. This is so wrong, as there is complete overlapping of these disorders along with spectrum issues! There needs to be a complete over haul of how people are assessed and diagnosed with any “unusual” challenges. We live in a world where treatments are quickly prescribed via pharmacological means, and not as delving into what other historic genetic, nutrition, social, or other means could have co-mingled into a “stew” of differences.

 

[WereBear]

We live in a world where treatments are quickly prescribed via pharmacological means, and not as delving into what other historic genetic, nutrition, social, or other means could have co-mingled into a “stew” of differences.

Sadly so, especially since, of all the professions, since I think the misconception of a "pill for every ill" would apply least of all to psychiatric/psychological issues. Mind you, there is a strong mind/body link: my undiagnosed autism created incredible stress, which my body responded with way too much adrenal hormones. This led to my array of physical issues.

My depression was completely situational: I was dying by inches and no one could figure out why. I was reacting utterly sensibly to the fact that my livelihood and marriage were in danger, and yet all they wanted to do was give me Prozac.

My panic attacks and crippling anxiety yielded to therapeutic niacin. Gabapentin worked for two weeks, and not well, and I was told it would take 18 months to taper off it! (I did it in six with the help of cheltated magnesium.)

My mood swings and frantic hunger turned out to be handled fine with low carb diet. My father and grandfather died from Type II diabetic complications; turns out, treating it with diet works best. Now I don't worry about developing this kind of diabetes; my blood sugars are low and stable. My blood pressure also normalized.

I now consider the array of psychologic conditions Spectrum people prone to are very attributable to environmental factors; which official sources seems to ignore. Lowering overwhelming input was what I needed; I had to diagnosis myself, then insist on better treatment, to get it.

 

[Mary Anne]

Sadly so, especially since, of all the professions, since I think the misconception of a "pill for every ill" would apply least of all to psychiatric/psychological issues. Mind you, there is a strong mind/body link: my undiagnosed autism created incredible stress, which my body responded with way too much adrenal hormones. This led to my array of physical issues.

My depression was completely situational: I was dying by inches and no one could figure out why. I was reacting utterly sensibly to the fact that my livelihood and marriage were in danger, and yet all they wanted to do was give me Prozac.

My panic attacks and crippling anxiety yielded to therapeutic niacin. Gabapentin worked for two weeks, and not well, and I was told it would take 18 months to taper off it! (I did it in six with the help of cheltated magnesium.)

My mood swings and frantic hunger turned out to be handled fine with low carb diet. My father and grandfather died from Type II diabetic complications; turns out, treating it with diet works best. Now I don't worry about developing this kind of diabetes; my blood sugars are low and stable. My blood pressure also normalized.

I now consider the array of psychologic conditions Spectrum people prone to are very attributable to environmental factors; which official sources seems to ignore. Lowering overwhelming input was what I needed; I had to diagnosis myself, then insist on better treatment, to get it.

Western medicine is never about holistic, nutrition, or environmental factors. If only we had all been born in Asia!

 

[clg114]

I would like an official diagnosis, but at a minim7m of $3000 to $5000 it just is not EVER going to happen. So, I can tell folks if I choose to (which when I have it’s fallen on positively deaf clueless and uneducated ears (so to speak in metaphor), and so, my own personal knowledge will have to suffice. I am ok with that.
It’s astonishing, that even within the mental health world in which I was trained, and work, that there is a total lack of autism. Accommodations and education seem to be for those with schizophrenia, bi-polar, depression, OCD, anxiety, etc, while anything having to do with aspergers, or autism is left to those with specialized training and certifications. This is so wrong, as there is complete overlapping of these disorders along with spectrum issues! There needs to be a complete over haul of how people are assessed and diagnosed with any “unusual” challenges. We live in a world where treatments are quickly prescribed via pharmacological means, and not as delving into what other historic genetic, nutrition, social, or other means could have co-mingled into a “stew” of differences.

Mary Anne, why is it so expensive to get a diagnosis there? I live in Idaho and was diagnosed with DSM-4 ten years ago. I paid a clinical psychologist $350 to diagnose me. It is hard to believe that it went up that much in ten years or that there is that much difference from one state to another. Maybe you could shop around, having that diagnosis is really nice. It explained a lot about my life.

 

[Mary Anne]

That

Mary Anne, why is it so expensive to get a diagnosis there? I live in Idaho and was diagnosed with DSM-4 ten years ago. I paid a clinical psychologist $350 to diagnose me. It is hard to believe that it went up that much in ten years or that there is that much difference from one state to another. Maybe you could shop around, having that diagnosis is really nice. It explained a lot about my life.

I did shop around, but this IS interesting to hear. I am in Chicago region...EVERYTHING is more expensive LOL. I searched for autism diagnosis through autism specialized clinicians. Most would ONLY test children and refused testing adults! Nonetheless, I was told by several, that even testing toddlers and young children costs within the same price range. It’s probably what the insurance market will bear, right?

The few I found all had that price range due to the multiple testing and hours need to do them. I did find that the University of Illinois at Chicago has a special lab that tests for autism but by that time, I just decided it did not matter to me to have “official” diagnosis as I absolutely am convinced. Having the diagnosis is not going to get me workplace accommodations, or help me get back with family, or increase my friends understanding me, etc.

 

[clg114]

That


I did shop around, but this IS interesting to hear. I am in Chicago region...EVERYTHING is more expensive LOL. I searched for autism diagnosis through autism specialized clinicians. Most would ONLY test children and refused testing adults! Nonetheless, I was told by several, that even testing toddlers and young children costs within the same price range. It’s probably what the insurance market will bear, right?

The few I found all had that price range due to the multiple testing and hours need to do them. I did find that the University of Illinois at Chicago has a special lab that tests for autism but by that time, I just decided it did not matter to me to have “official” diagnosis as I absolutely am convinced. Having the diagnosis is not going to get me workplace accommodations, or help me get back with family, or increase my friends understanding me, etc.

I hear you. I was sixty-two when I got diagnosed and I was not seeking any kind of accommodations or help. I already had a good career, a wife, kids and grandkids. Like you, I thought that I had Asperger's Syndrome. I just wanted to know for sure.

 

[AuBurney Tuckerson]

Hi all,

I'm new to the forum, and almost exclusively joined in order to get the opinion of people that have first hand experience of Aspergers/Autism.
I've been ruminating on the possibility of pursuing a diagnosis (or a ruling out) for Aspergers since reading an article lately on the experiences of females diagnosed later in life with HFA. Their stories very much resonated with me and prompted me (after years of people making Aspie jokes to me) to research it for myself and see if there was any leverage to the possibility.

Rather than write an entire essay, I've bullet-pointed some characteristics that I feel fit.
I'm curious as to whether anyone here, particularly if you've been diagnosed, can relate to them and feel it may be worth pursuing?

Childhood
- Meltdowns.
- Flapping.
- Refusal to wear waistbanded clothing or close fitting clothing.
- Preferred playing alone.
- Refusal to eat foods that had a weird texture or smell.
- Hyperlexic, also taught self to walk, to quote my mother "just got up one day and started walking."
- Struggled to assimilate to the move from pre-school to nursery school.

Adulthood/
Adolescence
- Often referred to as "overly blunt" or "insensitive" though I most definitely don't mean to be.
- Encyclopedic knowledge of various interests. E.G - GoT, LOTR, Psychiatric disorders, Serial Killers.
- Repetitively play the same video games over and over again, often repeating the same choices and actions.
- Tapping fingers, biting nails, bouncing leg, clicking teeth, rubbing face, chewing my cheek without even realising it.
- When interrupted during a task at work, I find it very difficult to get started again and sometimes respond with anger. Similarly if someone makes changes within the office. Major office changes have been catalysts to leaving jobs in the past.
- Hypersensitive to smells (heaven forbid my partner changes the washing powder!) and touch. Sometimes sensitive to noise if I'm in a very crowded place or the noise is extremely loud. Have a tendency to go almost mute if I get overwhelmed.
- I virtually never leave the house, I don't crave other people's company the way most people do. If I leave the house it's for a walk near the canal or because my partner is with me.
- Constantly analysing and observing people's behaviour, it helps me understand how to behave around them.

There are a few other things but it would take me a while to list them all.
I should state that I appear outwardly quite functional, hence my initial reluctance to explore this further. I realise that none other than a qualified professional can diagnose the syndrome, but I would hate to waste their time on what could be a total non-issue and just me being a bit quirky.

Any thoughts would be kindly appreciated

I have those same signs, too! Except that I don't think I learned to walk on my own.

 

[Mary Anne]

Mary Anne, why is it so expensive to get a diagnosis there? I live in Idaho and was diagnosed with DSM-4 ten years ago. I paid a clinical psychologist $350 to diagnose me. It is hard to believe that it went up that much in ten years or that there is that much difference from one state to another. Maybe you could shop around, having that diagnosis is really nice. It explained a lot about my life.

You went “ten years ago.” Things have changed. I also went to those who are specifically “autism specialists.” You were lucky in finding a regular non-specialist to write up that diagnosis for you. Most psychologists in non-rural mega city regions will not do that.