Diagnose or not?

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Hi, I am new here, just put a post in the general introduction forum.
I am 54 years old, have tried to get a diagnosis over the last 4-5 years I am guessing, I score very high on any of the online Asperger tests, but I am second guessing myself, I do recognize myself in many of the descriptions and can explain my childhood and younger life now. Always had the feeling of being an outsider and oddball. I never had any close friends. Most of the time would figure it out by myself. I had a very hard time with social relationships, never developed friendships, did not have any dating experience, went on to have a hard time with emotional relationships.
I have had one failed marriage for a number of reasons, but probably also because of my different behavior and expectations.
My current and second wife thinks I am using the suspected or self-diagnosis of Aspergers as an excuse. There is some gratification for me if I can explain what's going on with me for sure, but I hope that's not all I am looking for, but it sure would help.
Since there is no labtest to confirm, how do you get to a diagnosis? For an adult Aspie would it not be primarily by reflecting on your life? And how does it help to have the diagnosis? Am I pushing too hard?

A.J.

They use a few lines of inquiry for diagnosis. There's testing for different types of problem. Solving and social functioning. There are questionnaires ideally to be filled out by a parent or someone who can answer questions about you as a child. My psychologist asked for school reports and sure enough there were lots of relevant details there.

There is a book, very late diagnosis of Asperger syndrome, I suggest getting that.

Have you gotten in a room with a psychologist who specializes in ASD? I did that and everything was pretty smooth after that.

I was diagnosed this year at 38. The thing about making it to your fifties is that you'd have made more compensations on your own, and the clinician has to see past that.

I've come to believe in the value of diagnosis for any adult, because life can always be better if you act from a more complete understanding of how the traits affect things in your life.

Welcome to Wrong Planet! I have written a description about how to seek a diagnostic assessment for autism so that seekers become their own best advocate in the assessment, not merely an observer. Some of the information mightn't apply to your situation, but I suspect some of it will apply well.
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For autistic adults, diagnoses can be tricky. Many of them don’t need governmental, educational and corporate accommodations like younger people do (though some do in their futures), so a diagnosis is less necessary.

Diagnosing autistic adults is difficult because we present our autism differently than younger people. We have learned to mask (accommodate) in social and workplace situations. Unless a diagnostician is well trained and experienced in diagnosing adults, even diagnosticians can see convincing masking skills as the absence of autism if they aren’t careful.

So, what is an autistic adult to do? Well, many are “self-diagnosed” (for some, the correct descriptions are “self-aware” or “self-identified”) through their completion of self-reported screening tests like the University of Cambridge Autism Research Centre’s Autism Spectrum Quotient (AQ) (Adult), Empathy Quotient (EQ) for Adults, Friendship and Relationship Quotient (FQ), and Systemizing Quotient (SQ) (Adult). These tests have been shown to be quite accurate when compared to actual diagnoses.

For many autistic adults who have masking skills, knowing that they are likely autistic is all they seek from the screening tests. They move on in life with that knowledge and leave it at that. The world is full of self-identified autists. For others (like myself), the confirmation of a diagnosis is important to their knowledge and personal awareness; besides, some within the autistic community challenge those who are self-identified as having created their own diagnosis. Many diagnosed autists (including me) disagree with them because self-awareness matters a lot in most diagnoses.

So, how best should an individual seek a diagnosis? Here are some suggestions based my own experience and that of many others:

1) Complete one or more of the Cambridge screening tests ( http://www.autismresearchcentre.com/ ). To get you on your way, self-scoring AQ test is available online elsewhere ( https://www.psychology-tools.com/autism ... m-quotient ). Keep copies of their questions and your answers, as well as your scores. These copies will help you progress toward a diagnosis as well as informing your diagnostician about how your overall screening was accomplished. This will also identify what specific clinical deficits within your screening need attention.

2) Read one or more diagnostic books about autism. One of the very best is The Complete Guide to Asperger’s Syndrome by Tony Attwood, Ph.D. ( https://www.amazon.com/dp/1843106698 ). The book is as interesting as it is informative about the DSM-IV diagnostic criteria (the criteria was updated in the DSM-5, but the book still applies). Reading it will help you focus on those characteristics that your diagnostician will be investigating. Another very good book is Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder): How Seeking a Diagnosis in Adulthood Can Change Your Life by Philip Wylie ( https://www.amazon.com/dp/1849054339 ). The book describes how to navigate the process of self-identifying as autistic or pursuing a diagnosis.

3) Search the Internet for web sites which describe the characteristics that are known to be associated with Autism Spectrum Disorder, Asperger’s Syndrome and Autism Disorder. Attwood has published a great list of characteristics online ( http://www.tonyattwood.com.au/index.php ... -aspergers ). A list of examples for the DSM-5 criteria has also been published online ( https://depts.washington.edu/dbpeds/Scr ... eb2013.pdf ). Armed with these characteristics, make a detailed list of those which affect you and how they affect you in your life (personal, social and professional). Also, include copies (or descriptions) of your previous diagnoses (called “comorbids”) that might affect autism (these include obsessive-compulsion, anxiety and depression).

4) Think back to your childhood and identify those characteristics that were present in your youngest years. An autism diagnosis expects to show deficits in an individual’s early developmental years. For most autists, these characteristics include introversion (shyness), neologisms (made up words), angry outbursts (meltdowns), isolation (shutdowns), sensory sensitivities (noise) and lining up toys or books in order of size, shape or color (routines). In fact, many of the autism characteristics for adults were present in childhood.

5) Finally, you have scheduled a diagnosis and the day is approaching! Understand that, in the United States and many European nations, one of the gold-standard diagnostic tests is the Autism Diagnostic Observation Schedule 2nd Edition (ADOS-2) test (just FYI, https://en.wikipedia.org/wiki/Autism_Di ... n_Schedule ) within which is the module 4 (adult) test. You might want to search specifically for a diagnostician who uses this test. In it and similar tests, the diagnostician will take two or three hours completing it by asking you questions, asking you to complete a puzzle, asking you to narrate an illustrated book, and so on (a good description of the test and its modules can be viewed at https://www.youtube.com/watch?v=XVRZKMsDQGM ). It can seem a little insulting at first because it might feel like a child’s test. But, some of its activities are meant to show how well autistic adults use logic and imagination (called “Theory of Mind” or ToM).

My advice is: Try not to mask. Don’t “fake” anything. Just be yourself. You might also be asked to complete the ADOS-2 Social Responsiveness Scale test which is very similar to the Cambridge screening tests. At certain breaks, the diagnostician will score the test so far, and ask if you want to continue or rest for five to 10 minutes.

At this point, you will be able to share copies of your list of characteristics, comorbids and screening tests with the diagnostician. My diagnostician LOVED that I brought copies for her. She said that they saved her a lot of time. She even used some of my detailed descriptions of characteristics within her written assessment a few weeks after the diagnosis.

At the end of the test, your diagnostician will tell you your diagnosis (Autism, Autism Spectrum or Non-Spectrum). A written assessment will be sent to you in two to three weeks.

...Sooo, my advice is simple: Screen yourself and enjoy the knowledge of your screening results, or seek a diagnosis in the most informed way that you can. I respect either choice, and most others will, too. Good luck!

thank you guys!

That's pretty much what I have done, taken tests online, did a mental review of my childhood and school experiences, and read Tony Attwood's book.
I think my problem may be, that I became obsessive about the diagnosis. In reality it may not matter I just need to deal with my issues. I was kind of disappointed when a supposed Autism expert told me I was not really affected and it was hard to disagree, I think my wife took it very much as me "making stuff up, or looking for an excuse".
I am looking for answers and an explanation why I am the way I am and why it is difficult for me to change. It is not that I don't want to change, but I have a hard time with a lot of things.
My major symptoms have been depression, mood swings, and anxiety. I understand the diagnosis is just a label, that will not fix these, but I think it would help to have a feeling of understanding and comfort to not be the only one, and maybe be part of a group, some sense of belonging, instead of being the oddball loner.

Attwood had the most convincing description in my mind, and I fit so many of his described characteristics.
I will continue to look for a psychologist willing to listen. I can bring my test results and see how they react:
I have taken the following online:
-Ritvo Autism Asperger Diagnostic Scale - Revisited Total score 189.0, Language 15.0, Social relatedness 99.0,
Sensory/motor 33, Circumscribed interests 42
-Autism Spectrum Quotient - score 37 (average male ASD is 34, average neurotypical male is 23.5)
-Friendship Quotient - score 17 (average male ASD is 51.6, average neurotypical male is 73.9)
-Empathy Quotient - score 21 (average male ASD is 21.6, average neurotypical male is 37.4)
-Sytemising Quotient - score 92.0 (average male ASD is 80, average neurotypical male is 70.9)

I have a hard time finding somebody experienced with late adult diagnosis, is there anybody online, or Skype, that would do an assessment?

A diagnosis was very helpful to my partner. It wasn't an official one, but she got enough opinions to be convinced I was an Aspie. And, with that knowledge, we were able to make great strides in improving our relationship.

Most do. I surveyed autism-research papers, diagnostic criteria and exemplars, books, YouTube.com videos from autism conferences and even documentary movies. I even found a way to attend the 2015 IMfAR International Meeting for Autism Research conference. Given all that, my diagnosticians offered to refund a portion of my fees because I had "done so much of the work" for them. Now, THAT is obsession.

I think you are in a good spot right now. The next step should be to find a way to get a diagnosis, if that is still something you want to accomplish.

My fear is what do I do if I am diagnosed?
What do I do if I am NOT diagnosed?

If I am diagnosed, how does it help me? I would not need or benefit from disability payments, might even hurt me to have a 'condition'. It pretty much would only help me to understand and explain my course in life.

If I am not diagnosed I feel that there would be some kind of void, still an unexplained gap, why am I the way I am? Is my thinking off? In some weird way it would make me feel 'less normal' than with a diagnosis. So am I looking for an excuse or an explanation?

Either way my feelings and behavior are the same and they fit the described Aspie patterns. So what do I do about THAT? Cognitive Behavior Therapy? Keep masking? Some days are better than others, but sometimes I feel so overwhelmed and want to just break free, rip off the mask.

In social or family settings it can be so weird, even if I am physically there, I do not get all the information, drift off mentally to where I feel like I am on the outside observing the world, not part of it. I have always been the one that's quiet, does not talk a lot. I listen, but sometimes it sounds just like a blur, kind of like the teachers in the "Peanuts". I miss parts of the conversation, it irritates others when I keep asking questions, so I pretend often that I know what's going on. I wish I could make them, specifically my wife, understand, that that is not a conscious disrespect towards them. Again, I think she thinks I am coming up with an excuse and she thinks I am not interested, more interested in myself, or just choose to do what I like.

If you are diagnosed, you learn to accommodate it into your life because it will be there, anyway. If you aren't diagnosed, you realize that you share some traits with others who are autistic, especially since you have been screened as likely having ASD. Most people won't know about your autism unless you tell them. I would advise that you eventually do tell others. It is a lot easier in life.

You might not have a need to benefit from educational, governmental or professional assistance, but being diagnosed can be stuffed into your back pocket until one day, you realize that you do need a little assistance. As with all the conditions others have, laws like the U.S. HIPAA law protects your medical and psychological privacy, too.

Actually, you would be able to use an ASD diagnosis as an explanation of your abilities and disabilities, if you chose to do so. Today's autism isn't like the autism of the 1960s. A lot of people in the world understand enough to realize that it means something to those of us who have it in our lives. Families with autistic members REALLY understand autism. They are often our heroes and biggest advocates.

Including some ABA or CBT might help you. But, that is something for you to explore after a diagnosis. Anxiety is a significant comorbid among autists. Learning to cope with it is a valid challenge and can be helpful.

Whatever path you choose, become your own best advocate. Over time, you will add to your already abundant knowledge about yourself. Whether you seek a diagnosis or not, knowing yourself is a huge benefit to your life.

You could also be diagnosed with something else.

True, but Avoidant Personality Disorder (the next most likely differential diagnosis) is usually recognized in the "'tween" or "teen" years, whereas ASD is seen reliably as early as 18 months.

Do not underestimate this factor.


This is important. If you do fear others finding out you can ask for what I call an unofficial diagnosis. The clinician asses you, says in his or her professional opinion you are autistic but produces no diagnostic report. You have validation for your suspicions but there are no records. Since the clinician does not have to write up a diagnostic report it should be less expensive. If you do it this way since there are no records you would not be eligible for and supports or benefits.


That is the main reason why I do recommend most get professionally assessed if they can. If things go bad and you do need it you will probably have less money for it. The downside of being professionally diagnosed while still highly functional is that it is more likely even if you are autistic you will get misdiagnosed or not diagnosed as understanding how autism presents in adults even among autism experts is quite varied. If you decide to go for an assessment seek a clinician who knows how autism presents in older adults

The goal of going to any assessment should not be an Autism diagnoses per se but to find out why you are the way you are.

If you are diagnosed with something other then autism a lot of the above still applies.

From what I've seen, autism as a way to disability benefits is only useful for kids, not older adults.

Good discussion here and some good pointers, liked the idea of "unofficial diagnosis".

Any personality or psychological or psychiatric diagnosis seems highly subjective to me. There are no true objective criteria and there is not underlying "disease" or "pathology" as far as I understand.
That's where I have such problems with the psychiatrist I am seeing, he says I have depression, which is definitely one of my symptoms, but he says it is "chemical" and started me on Zoloft. After a couple of years the effect seems to have been less effective and side effects (especially lowered sex drive) have been kind of hard on me, so he switched me to Wellbutrin. Our appointment are usually always checking I have no suicidal thought (which I sometimes have) not had weight changes, get enough sleep, have good sleep pattern...no other therapy or questions. After my wife caught me with porn on my tablet I had seen a marriage counselor two years ago, who told me I had a porn addiction and needed inpatient therapy (after one visit!),my mentioning of having behavior characteristics of Aspergers was completely brushed aside and never taken into consideration. They all just seem to treat symptoms, preferably with a billable procedure or expensive out of pocket inpatient therapy...
If I was not mentally ill I think the "therapy" and pseudo diagnosis makes me mentally ill.

I avoid any and all providers who reach for the medications first, and cover up the problems of one medication with ... another medication. But, that is just me.

Psychiatrists treat mental disorders, they are not trained to treat developmental disorders which is what Autism is. Today Psychiatrists mostly prescribe pills because and treat depression with pills to remove the chemical imbalance. Psychologists, not psychiatrists are the type of clinicians best positioned to asses and treat Autism.

That does not mean your psychiatrist is wrong. Autism is a common comorbid or co-occurring condition with Autism. So if you are autistic he is partially getting it right.

I am new to this site and I am so glad I have found it.
Your post connected so much with me. I also have had felt like an outsider my entire life. Even as a young child. I never had any close friends. I have had a very hard time with social relationships, I try to figure things out by myself. Did not have dating experiences. Relationships have always been a struggle or failure. I have not been able to develop emotional relationships. People see me as rude or not caring. Which I am not very empathetic. I do have a hard time showing emotion and actions to people a care about. How do you get people that you do care about to see that you really do care for them? I am a failure to this and would appreciate any advice or tips.