Am I disrespectful / bad person for wanting a 2nd opinion?

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Hokcone1
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14 Oct 2020, 2:11 pm

Sorry if this topic has been done to death before but would really appreciate input from the community on this, I have been building up the courage to post this.

Bit of background, I'm a 31 year old man with a good job and history of high achievement. I have a loving family and friends that care about me. I also have a very long history of anxiety and depression stretching back as long as I can remember into childhood. I was a weird introverted child, spoke oddly, but academically top of my class. I actively learned social techniques in my teenage years and early 20s and now I get on very well with people, in fact I'm quite extroverted and funny but that is something that has taken me years to learn and relates to learned behaviour and conscious effort rather than something that's inherent to me.

I burned out in my job three years ago and my employer recommended I get counselling. Three sessions in and the counsellor recommended I seek an adult autism assessment. I did the interviews and the relevant tests and my mother was interviewed as well. I scored 172 on RAADS-R and did IQ assessment under the WASI-II which put me in the 98th percentile.

Ultimately the assessment said that while I have traits of ASD but I did not meet sufficient criteria to warrant a full diagnosis of ASD with the report stating that "extremely high IQ being a significant factor in managing traits of ASD; he has learned to meet the social demands of the world so successfully that he has masked his difficulties to those around him... he has learned a range of strategies to cope with social situations that he found challenging... he has an adequate awareness of emotional states of others but this does not come naturally to him and is an area he finds challenging."

I feel extremely guilty that I should have come out of that final session with that report and been delighted that I wasn't diagnosed with ASD. But that's not the case and it has weighed on my mind for the last 3 years. I have kept up to date on research and know that there is a growing body of work out there on masking and camouflaging (I know that is a predominantly female attribute according to the literature but I feel it's very applicable to me). I feel like these difficulties that I have and always had and the way that they feed into my identity makes me want to be able to have the ASD label so that I can actually easily describe to people why I am the way I am rather than having to explain that I went for an assessment, had these results which are nearly there but quite so I don't have a diagnosis... I just don't know whether going for a second opinion is something that I should do for me or is going for a second opinion disrespectful to those with far more difficulties than I do and who aren't as lucky as I am.

TLDR: Went for ASD assessment, told I have the traits but not full criteria due to high IQ and success at masking - Am I a bad person for wanting to get a second opinion or should I just count myself lucky that I'm in a fortunate position?


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naturalplastic
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14 Oct 2020, 2:40 pm

Go for it. Get a second opinion if you can afford the time and money.

The reason I say that is:

That doesnt sound right. That you would be diagnosed as being on the autism spectrum, but youre not because you have a high IQ that enables you to up with "strategies" to cope.

I think that they mean that you have a lot the traits of autistics, but arent quite autistic, and BTW ..you have a high IQ that enables you to cope.

Either you are misunderstand them, or you rightly understand them, but they messed up.



AuroraBorealisGazer
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14 Oct 2020, 2:40 pm

You should not feel any guilt for wanting a second opinion. And It sounds entirely justified. Having a high IQ does not mean you cannot be on the spectrum, so I would question any psychiatrist who rules it out based on this. We all seem to have varying abilities when it comes to masking. Being able to mask can be necessary for our survival at times, so those that can mask often need to do it. But simply being able to fly under the radar and hide your struggles does not mean you're not struggling with the affects of ASD.

In short, the person who drew these conclusions does not seem very knowledgeable about ASD. A second opinion seems warranted.



magz
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14 Oct 2020, 2:50 pm

There's nothing wrong in wanting a second opinion, ever.
If I understand your post correctly, they didn't deny you are on the spectrum, but they decided you don't need support typical for ASD people.
ASD evaluation may be improtant in case your mental health deteriorated, to lower your chances of misdiagnosis then.


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Jiheisho
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14 Oct 2020, 2:53 pm

I second everyone's second opinion opinion.



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14 Oct 2020, 3:55 pm

Me, too. Get the second opinion. Make sure you explain the emotional difficulties caused by masking and the toll it takes on your mental health. Read more on the subject and see if any of the descriptions autists have of masking sound familiar to you. Use them in your next assessment.


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14 Oct 2020, 4:02 pm

It sounds like the diagnosis said you were autistic but that it didn't count because it didn't inconvenience you enough. :roll: It does not make sense to me. A "high functioning autistic" is still an autistic.

The only contrived explanation I can imagine is if in Ireland there are legal complexities which prohibit giving you the diagnosis if you aren't disabled by the condition.

Personally, I would want an accurate diagnosis--which it sounds suspiciously like you didn't get--even if there wasn't much I could do with the information...except change your WP profile and surprise select friends and family.


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14 Oct 2020, 4:05 pm

Sure, what harm can getting a 2nd opinion do.

What you may like to keep in mind, is that the diagnosis is often dependent on as to whether the ASD traits that you have have an impact on your daily living as a human being.

When the traits do not hinder you significantly in everyday life, you may not get a formal diagnosis but be told that you have various ASD traits.

The ASD term really is to describe someone who has a disability in life.
So if the ASD traits do not actually cause you any incapacity in normal life, then in theory they may say that you are not disabled (as you can do all the things you want to because you have worked out how to by yourself).

To be completely honest with you, i have a formal diagnosis of ASD, but i wish i didn't basically, as I do find loads of aspects of life extremely hard. I would much prefer to not have these obstacles to a normal life regardless as to whether i have ASD traits or not.

But, still. Please don't let me discourage you. If you want a second opinion go for it.
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Hokcone1
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14 Oct 2020, 4:09 pm

Thanks so much everyone. This really is a weight off my shoulders to put this out there and for people to provide constructive feedback, really helpful. On a few comments, I realised it might be good for me to include the full concluding paragraph of the report and I also include the first recommendation after the conclusion as well, so bear with me:

"In relation to the assessment for ASD, [Hokcone1] would appear to have traits of ASD however in my clinical opinion he does not meet sufficient criteria to warrant a full diagnosis of ASD. [Hokcone1]'s extremely high IQ is likely to be a significant factor in his ability to manage his traits of ASD; he has learned to meet the social demands of the world so successfully that he has masked his difficulties to those around him. Although he reported that he has struggled to to understand social interactions in the past, [Hokcone1] has learned a range of strategies to understand social situations that he found challenging. In relation to his understanding of emotions and the role they play in negotiating relationships [Hokcone1]'s response suggest that he has an adequate awareness of the emotional states of both himself and other people, however this does not come naturally to [Hokcone1] and is an area that he finds challenging. This makes social situations difficult for him and causes him significant social anxiety and which can be overwhelming in work situations. Most likely due to his difficulties reading social situations, [Hokcone1] experiences a pervasive anxiety that he is "getting it wrong" which has led to a feeling of low sel-esteem which is likely to have substantially contributed to his periods of low mood and depressio. [Hokcone1] also has different interests from his friends and colleagues which is likely to intensify his feelings of being different from others and may lead to feelings of isolation at times." There is a couple sentences then about my family relationship which I won't quote here and that was it for the conclusion

In the recommendations section it then read:

1. [Hokcone1] is likely to benefit from psycho-education relating to his traits of ASD. Bibliotherapy is likely to be helpful to him due to his extensive verbal skills and I have provided him with a list of books and website links. Understanding how his diagnosis impacts on his life and some practical guidelines around coping with traits of ASD may assist [Hokcone1] and held him to use his strengths to manage social demands even more effectively.

I just thought that this would be useful and add more colour but the comments already have made me feel better, thank you.


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14 Oct 2020, 4:21 pm

madbutnotmad wrote:
When the traits do not hinder you significantly in everyday life, you may not get a formal diagnosis but be told that you have various ASD traits.

Do you folk do things differently in the UK?

I was 64 and blissfully doubly retired when I got my diagnosis. My mild autism does not affect my ability to not work.

The psychologist who assessed me did not hold it against me that I look good on paper and do not need therapy or counseling. She just gave me funny looks.

Despite looking good on paper and having charted a good course through life I still have mild autism and that was the correct diagnosis even though it is mostly of novelty value--and that it helps me better understand the previous six decades of my life.


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AuroraBorealisGazer
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14 Oct 2020, 4:25 pm

^
^
Thank you for posting the doctors assessment. I'm not very good at reading in-between the lines, but I believe the doctor may have in fact diagnosed you with ASD. On your paperwork are there any areas where they have to clearly state a definite diagnosis? If not, could you call and ask for clarification - a simple "yes" or "no" answer?



Hokcone1
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14 Oct 2020, 4:44 pm

AuroraBorealisGazer wrote:
^
^
Thank you for posting the doctors assessment. I'm not very good at reading in-between the lines, but I believe the doctor may have in fact diagnosed you with ASD. On your paperwork are there any areas where they have to clearly state a definite diagnosis? If not, could you call and ask for clarification - a simple "yes" or "no" answer?


Thanks - No there is nothing more definitive. I queried at the final session myself and asked whether this is a diagnosis of ASD and the explanation given was that it wasn't, that in effect if I was to imagine a bar chart with all the ASD trait difficulties that I have, that they would bring me to a level where it would be ASD (in effect, let's say the difficulties each have a negative value) but that due to my coping mechanisms and strengths, these have a positive value which when they net out, mean that I don't reach the clincal level.

When this got explained to me, I thought "Ok", but it still weighed on me and I think that's why I've found it so difficult to let go. I know I'm very fortunate to have these strengths but they don't fully offset and replace my weaknesses, they just compensate and mask them, if that makes sense?


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14 Oct 2020, 4:45 pm

I interpret his assessment somewhat differently. The clinician believes he is autistic---but that his presentation doesn't warrant an official diagnosis which would be put on his record. Hence, he is not officially diagnosed, but informally diagnosed.

It stated that (Hokcone) does not "meet sufficient criteria to warrant a full diagnosis of ASD."

Thus, he was not declared disabled, and he's not entitled to the benefits a "full" ASD diagnosis would "warrant."

Why not go for a second opinion? Especially if you feel like you actually do need more support than what you are receiving at present.

Have you been able to obtain employment after you burned out on that job three years ago?



Hokcone1
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14 Oct 2020, 4:58 pm

kraftiekortie wrote:
I interpret his assessment somewhat differently. The clinician believes he is autistic---but that his presentation doesn't warrant an official diagnosis which would be put on his record. Hence, he is not officially diagnosed, but informally diagnosed.

It stated that (Hokcone) does not "meet sufficient criteria to warrant a full diagnosis of ASD."

Thus, he was not declared disabled, and he's not entitled to the benefits a "full" ASD diagnosis would "warrant."

Why not go for a second opinion? Especially if you feel like you actually do need more support than what you are receiving at present.

Have you been able to obtain employment after you burned out on that job three years ago?


Thanks you. I am still in that job. My employer has been really supportive to me, I took time off work, was provided 1 to 1 business coaching on a monthly basis for a year as well as counselling through their EAP programme, I'm very fortunate and grateful to work where I am.

I don't need the diagnosis to access any supports or to be get an official disability recognition (I know that's key for work supports and reasonable accommodations, again I'm lucky that I work somewhere where I don't need to go down an official route to get supports I need, I can just ask or else im at a level where I put in my own supports). It's more to do with my identity which I really struggled with, I have these issues which I think fit and explain me and which I could then use to explain to others (including my family) as to why I am the way I am (not as an excuse, just an explanation). For instance, my mother got interviewed as part of the process (and therefore my family knew this was happening) and afterwards I told them I did not got diagnosed with ASD and their reaction was "Oh good, you're fine then." I didn't have the heart to go into an explanation and similar for close friends as well who I told this was happening. At the same time, I won't tell them I got an "informal diagnosis" or say that I have traits of ASD as it's so nebulous and vague as to lose meaning that I just kept my mouth shut.


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kraftiekortie
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14 Oct 2020, 5:09 pm

I sense that you feel an especial affinity for other autistic folks, as opposed to "regular" folks. You feel like you have an "identity" as an autistic person. Hence, you want an official confirmation that you are autistic.

Rather like me, who wants to have an identity as a "literary" person, even though I'm not a published writer.

Anybody worth his/her salt will probably not disparage you for not having an "official" diagnosis.

There is a trend towards not diagnosing people with autism who are not severely disabled by it. This is a reaction to the notion that autism has been "over-diagnosed" in recent years. And to the rather cynical notion that people are seeking a "free ride." If you have a clinician who feels that way, you wouldn't stand a chance.

You probably would stand a "better chance" in a more enlightened region where there aren't many overworked clinicians. Especially somebody who specializes in "Asperger's Syndrome," rather than purely "autism." Asperger's Syndrome persists in the ICD-10, but probably won't persist in the ICD-11. It is already gone from the DSM-V.



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14 Oct 2020, 5:26 pm

But it does look like you do need support and your employer is providing it to you. If you were not there, another company might have fired you. I know about the DSM-5 in the US, but not your country's criteria. But if you are having significant challenges in a social or occupational setting, then you get an ASD diagnosis.

I would ask for another opinion or ask your first doctor. Perhaps he/she did not understand how much your company is helping you.