Hi, and Newly (un)diagnosed: advice needed

[Prospero]

Hey guys, it's great to join the community! I'm new here and I thought I'd ask for your opinion about the adhd/autism assessment that I've just had (I live in Stockholm and they mostly adhere to DSM5 here). I am a 35 year old man, never had a formal assessment before. They decided to assess me for both since I had a bunch of diagnoses from another country (incl adhd), but the psychiatrist here thought the symptoms pointed towards autism, not a personality disorder. Indeed, I've always had major social and mentalizing difficulties, even if all this has sufficiently improved over the years, avoid eye contact (but manage it satisfactorily when there is only 1-2 people I am talking to), got those "special interests", but the major problem has always been stereotypical movements and stimming, something that defines my life to a very significant extent.

Upon all the tests and interviews (incl my partner and mother) the assessor confirmed ADHD and ruled that I currently don't meet enough criteria for ASD (e.g. only eye contact issues against a relatively well developed ability to read cues isn't enough to meet A2, while insufficient dependence on routine and sensory specificities are too mild for B (and the special interests are much less expressed than they used to be). That said, he also told me that on the basis of my childhood investigation I should definitely have received a formal ASD diagnosis as a kid, but now things have sufficiently smoothed out and it's ADHD that impacts my life the most.

So I was thinking... It's not that I'm chasing a formal diagnosis (although I find the label helpful to bring things home and have a road map of what I can change and what I have to accept), and what he said to me privately (that I'm def on the subclinical part of the spectrum) provides a relieving and illuminating explanation on why I've been struggling on multiple fronts all my life (even aside from ADHD).

It's true that my support needs are quite low, I'm virtually autonomous, yet my partner is soon gone to work in another country, and I am afraid my life will quickly fall apart in without his structuring presence. So, I'm not that sure, maybe there is supportive infrastructure in place that I'm missing out on this way?

Do you think it's a justified decision (also in terms of making the support infrastructure more accessible to people whose needs are higher by excluding relatively mild cases like mine) to not formally diagnose ASD when the criteria have definitely been met in the past but one can make the case that I'm too well adapted, despite the prominent stimming issue and other specificities and anxieties they generate?

Thanks a lot for your thoughts!

 

[Rodafina]

Hello and welcome. You are wrestling with some big questions right now, but the forum is a good place to find answers. I hope you find what you are looking for here. Let us know if you need any help figuring things out.

 

[Nitro]

 

[tazz]

Hi. Welcome.

DSM Also has these criteria (my highlight):

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

I thought about these because firstly it would seem to me that a diagnosis is still appropriate if the symptoms only manifest when social demands increase - which would be the case if, for example, you can cope fine when living with your partner but not when living on your own. Secondly, the diagnosis would still be appropriate even if you're able to successfully mask.

And finally, the symptoms must cause problems (simply put). If your symptoms don't cause problems then it would not be appropriate to diagnose ASD. However, your problems don't have to be present all the time. So again, it would seem to me that a diagnosis would be appropriate even if you can cope fine with support from a partner but would have problems at times when your partner is not around.

I'm not a psychiatrist or trained to make assessments. I'm basing the above on my assessment. I had a thorough assessment in the UK and as it was explained to me, the diagnosis is still appropriate if the symptoms are i) present only in certain situations, ii) present but successfully masked and iii) only cause problems intermittently.

 

[tree]

 

[kriss72]

Hi, is it possible for you to get a second opinion? I don't know how common it is to "grow out" of ASD, I think it might be more learning to cope with it/masking it - but that comes with a cost that might not be sustainable, maybe a second doctor would come to a new conclusion? I have had some professionals tell me the ADHD is my main issue, and others that it is the ASD - it is not significant to me, the mix explains my chalenges, and it depends on things like my level of stress on which one wins...

You wrote "...maybe there is supportive infrastructure in place that I'm missing out on..." I'm not sure if you are thinking of something specific? - Do you get any support now? except from your partner? I don't know how it works in Stockholm, I live in Denmark, so might be similar... in my "komune" I have a social worker (social pædago) assigned, she helps me with making plans of what I should do each day, like if I have a doctors appoinment it will say so, or if I need to clean the living room there will be a timeslot for that in the plan, and she helps me break complex tasks into managable parts - I have a dual diagnosis, but I don't think that was the trigger for getting help, the trigger was me not being able to cope with the demands and going to the "komune" asking for help, (going there is a story on its own) - what did help was that I gave the social worker a copy of my diagnosis papers which helped her to understand how to best help me - so if you have a description of your symptoms, whether they resultet in a dual ASD/ADHD diagnosis or "just" the ADHD, it might be helpfull in getting the right help.

 

[Neonatal RRT]

Hey guys, it's great to join the community! I'm new here and I thought I'd ask for your opinion about the adhd/autism assessment that I've just had (I live in Stockholm and they mostly adhere to DSM5 here). I am a 35 year old man, never had a formal assessment before. They decided to assess me for both since I had a bunch of diagnoses from another country (incl adhd), but the psychiatrist here thought the symptoms pointed towards autism, not a personality disorder. Indeed, I've always had major social and mentalizing difficulties, even if all this has sufficiently improved over the years, avoid eye contact (but manage it satisfactorily when there is only 1-2 people I am talking to), got those "special interests", but the major problem has always been stereotypical movements and stimming, something that defines my life to a very significant extent.

Upon all the tests and interviews (incl my partner and mother) the assessor confirmed ADHD and ruled that I currently don't meet enough criteria for ASD (e.g. only eye contact issues against a relatively well developed ability to read cues isn't enough to meet A2, while insufficient dependence on routine and sensory specificities are too mild for B (and the special interests are much less expressed than they used to be). That said, he also told me that on the basis of my childhood investigation I should definitely have received a formal ASD diagnosis as a kid, but now things have sufficiently smoothed out and it's ADHD that impacts my life the most.

So I was thinking... It's not that I'm chasing a formal diagnosis (although I find the label helpful to bring things home and have a road map of what I can change and what I have to accept), and what he said to me privately (that I'm def on the subclinical part of the spectrum) provides a relieving and illuminating explanation on why I've been struggling on multiple fronts all my life (even aside from ADHD).

It's true that my support needs are quite low, I'm virtually autonomous, yet my partner is soon gone to work in another country, and I am afraid my life will quickly fall apart in without his structuring presence. So, I'm not that sure, maybe there is supportive infrastructure in place that I'm missing out on this way?

Do you think it's a justified decision (also in terms of making the support infrastructure more accessible to people whose needs are higher by excluding relatively mild cases like mine) to not formally diagnose ASD when the criteria have definitely been met in the past but one can make the case that I'm too well adapted, despite the prominent stimming issue and other specificities and anxieties they generate?

Thanks a lot for your thoughts!

I wouldn't get too hung up on the importance of any particular diagnosis unless it is significant enough that one qualifies for assistance. When it significantly affects other people and/or you need to sign legal or government paperwork, then the diagnosis becomes important. As an ASD-1, myself, I don't need assistance, but I clearly have all the signs and symptoms in terms of behaviors, immunology, and physiology. The diagnosis is more or less some "handy information" for me so I can understand that I am different enough from the general population and I have to be aware of this for a long list of reasons. I am openly autistic with my family, my close co-workers, and my students, as they need to know who they are dealing with so they have the proper context and perspective before passing judgment upon me. I have had a lifetime of misinterpretations, misunderstandings, and false "moral diagnosis" made of me. If I can "nip it at the bud" beforehand, it's helpful. There's a lot of value in knowing one's self. Furthermore, there is a lot of crossover with ADHD and autism symptoms, and depending upon your performance, your current concerns at the psychologist's office, and their cognitive bias, it will tip the scales in one direction or another. When people have "milder cases", if they are female, and/or can mask/camouflage, the psychologist may misdiagnose.

 

[Alexej]

HI and welcome to the Forums.

 

[AndyFBlues]

Welcome to the forum!

 

[VictorR]

Welcome!

I agree with the general sentiment that though our ability to cope and adapt to the world around us may change over time and circumstance, that AS is a part of who we are.

Going into my diagnosis, it was one of my concerns as well - that as a child, and even into my teen years and early 20s, that a diagnosis of AS would have been very straight forward, and had I been diagnosed as a child, I probably would have been diagnosed as ASD2 as I was quite different and was having a lot more challenges.

But over time, I've learned to adapt and find myself, and in some ways, I don't think it's all masking - I think some of the changes are better supporting myself in general and being comfortable with myself.

If a formal diagnosis may open the door to certain supports that you'd benefit from but aren't currently in receipt of, then perhaps you may wish to get a second opinion, since a diagnosis is, at the end of the day, an opinion.

 

[Prospero]

Thanks so much everyone for your responses! It's always great to relate to others' experiences and feel like there is a friendly community. I've been reading up on recent research on neurodivergency and it appears that some people who were diagnosed with ASD as kids do lose their diagnoses as they grow older (a minority but still), the baseline level of functioning being the key predictor, and that the view is shifting to that there is not one but several spectrums of abilities that define a specific constellation of issues that each person exhibits hence the diagnostic difficulties when everyone is assessed acording to this strict unifying set of criteria that don't accurately represent everybody's lives. When I look back at myself in childhood and adolesence I did have more social issues than now, and most of these "developments" don't necessarily involve masking, e.g. I do think I've leaned to read social and non-verbal cues much better intuitivelty, without much cognitive effort, and adapt organically, which leads almost everyone I've mentioned my assessment to say that I "don't appear autistic" even upon a closer look which is of course in itself problematic I guess, but it does mean that people find interactions with me smooth and "natural" (when I fake interest that is, there is always something to fake but even that comes naturally). My understanding is research is still pretty much in the dark as to whether its leanred compensation strategies or some kind of "neurobiological" adjustments in the growing brain. But in essence I see my social experience as autistic, I am not really super interested in people I hang out with, varied social interactions have transformed from a profound discomfort to an unecessary but manageable and often enjoyable experience (but still involve too much self-reflection and self policing as to whether I'm "natural enough" or whether I am sharing too much or behave adequately to the situation etc, these thoughts are literally always with me). So I don't know. I think I'll try to seek a second opinion but it's quite clear I am on the spectrum somewhere close to the diagnosis threshhold but since it's quite subjective it won't change much for me whatever the second opinion is.

 

[Neonatal RRT]

I do think I've leaned to read social and non-verbal cues much better intuitivelty, without much cognitive effort, and adapt organically, which leads almost everyone I've mentioned my assessment to say that I "don't appear autistic" even upon a closer look which is of course in itself problematic I guess, but it does mean that people find interactions with me smooth and "natural" (when I fake interest that is, there is always something to fake but even that comes naturally). My understanding is research is still pretty much in the dark as to whether its leanred compensation strategies or some kind of "neurobiological" adjustments in the growing brain. But in essence I see my social experience as autistic, I am not really super interested in people I hang out with, varied social interactions have transformed from a profound discomfort to an unecessary but manageable and often enjoyable experience (but still involve too much self-reflection and self policing as to whether I'm "natural enough" or whether I am sharing too much or behave adequately to the situation etc, these thoughts are literally always with me).

First off, for some perspective and context. Autism is a prenatal, genetic & epigenetic, neurodevelopmental condition. There have been many studies looking at the anatomy (post mortem and imaging) and electroconductive pathways within the autistic brain. The areas of the brain affected suggest these changes begin to occur during the earliest development of the fetus. Immunological differences are apparent (a more profound cytokine response) and fine neuro-motor function is affected (wrists and hands, ankles and feet). Autism is a medical condition with secondary psychological and psychiatric symptoms. We are approaching crossroads where diagnosis of autism is made in the neurologist's office, not the psychologist's office.

Now, having said that, you are correct that the brain does have some plasticity and we can develop new neuropathways, to some extent. The effects of life experiences and therapy can help or harm. The limitations being within the anatomy of the brain, and the autistic brain does not have normal anatomy. From the cerebellum to the thalamus, the hypothalamus to the cortex, the migrational patterns are often different. Even at the cellular level, neurons in one area may have too few synaptic connections, and in others, too many. This is all very well documented and common knowledge within the literature. That's just the basics. So, yes, there are many things that can be learned and the brain can develop stronger and weaker conductive pathways, but the anatomy is different and can result in a wide array of processing delays, over/under conductivity and connectivity, hyper and hypo neurotransmitter turnover, etc. Plus, there are normal changes within the brain during the aging process. Plus, genetics may enhance or inhibit symptoms as we age. As adults, we are not what we were when we were children.

When someone who is acquainted with you says "you don't appear autistic", please take that with a very large grain of salt. Basically, that means you don't act like those 3 year old "poster children" for autism, or Dustin Hoffman's character in the movie Rainman. When I say this, I work in one of the largest children's hospitals in the world. We see autistic children day in, day out. Our staff have a pretty good idea of how an autistic child typically presents. Having said that, they wouldn't know an autistic adult even if they worked beside them for nearly 40 years,...me. They may sense that "something is off" a bit, but autism is NOT on their radar. I don't "appear autistic". Heck, I didn't know I was autistic until I was 52, even though I suspected I had many "mild" signs and symptoms. However, several different tests have demonstrated that I will repeatedly score within the more "extreme" part of the bell curve for autism, often 2X the threshold for the condition.

We are often not the best assessors of how "mild or severe" our condition is.

 

[Prospero]

First off, for some perspective and context. Autism is a prenatal, genetic & epigenetic, neurodevelopmental condition. There have been many studies looking at the anatomy (post mortem and imaging) and electroconductive pathways within the autistic brain. The areas of the brain affected suggest these changes begin to occur during the earliest development of the fetus. Immunological differences are apparent (a more profound cytokine response) and fine neuro-motor function is affected (wrists and hands, ankles and feet). Autism is a medical condition with secondary psychological and psychiatric symptoms. We are approaching crossroads where diagnosis of autism is made in the neurologist's office, not the psychologist's office.

Now, having said that, you are correct that the brain does have some plasticity and we can develop new neuropathways, to some extent. The effects of life experiences and therapy can help or harm. The limitations being within the anatomy of the brain, and the autistic brain does not have normal anatomy. From the cerebellum to the thalamus, the hypothalamus to the cortex, the migrational patterns are often different. Even at the cellular level, neurons in one area may have too few synaptic connections, and in others, too many. This is all very well documented and common knowledge within the literature. That's just the basics. So, yes, there are many things that can be learned and the brain can develop stronger and weaker conductive pathways, but the anatomy is different and can result in a wide array of processing delays, over/under conductivity and connectivity, hyper and hypo neurotransmitter turnover, etc. Plus, there are normal changes within the brain during the aging process. Plus, genetics may enhance or inhibit symptoms as we age. As adults, we are not what we were when we were children.

When someone who is acquainted with you says "you don't appear autistic", please take that with a very large grain of salt. Basically, that means you don't act like those 3 year old "poster children" for autism, or Dustin Hoffman's character in the movie Rainman. When I say this, I work in one of the largest children's hospitals in the world. We see autistic children day in, day out. Our staff have a pretty good idea of how an autistic child typically presents. Having said that, they wouldn't know an autistic adult even if they worked beside them for nearly 40 years,...me. They may sense that "something is off" a bit, but autism is NOT on their radar. I don't "appear autistic". Heck, I didn't know I was autistic until I was 52, even though I suspected I had many "mild" signs and symptoms. However, several different tests have demonstrated that I will repeatedly score within the more "extreme" part of the bell curve for autism, often 2X the threshold for the condition.

We are often not the best assessors of how "mild or severe" our condition is.

Thanks a lot for the detailed post and sharing your experience! Yes, these are indeed the basics but when I went deeper into the abyss I saw this special issue of Frontiers in Psychiatry which is supposed to be a snapshot of where research stands right now and it opens with the following sentence:
"There has been no single cause or pathophysiology found to be unique to all those with autism”
followed by
"None of the twelve papers support the DSM-5 ASD criteria as defining a unitary biological entity or natural kind.”
Which, as I read it, of course doesn't mean that there is no unity, just means that it's not yet sufficiently obvious so as to draw diagnostic criteria that don't cause a lot of dissent in the field.
But anyways I’m neither a doctor nor a life scientist, so just brought my catch. I’m indeed at the beginning of the journey so it’s not that I can make sense of all of it but maybe some of you guys will find it interesting to look at:

Editorial: Is autism a biological entity?

www.ncbi.nlm.nih.gov

 

[Shamar]

Hey guys, it's great to join the community! I'm new here and I thought I'd ask for your opinion about the adhd/autism assessment that I've just had (I live in Stockholm and they mostly adhere to DSM5 here). I am a 35 year old man, never had a formal assessment before. They decided to assess me for both since I had a bunch of diagnoses from another country (incl adhd), but the psychiatrist here thought the symptoms pointed towards autism, not a personality disorder. Indeed, I've always had major social and mentalizing difficulties, even if all this has sufficiently improved over the years, avoid eye contact (but manage it satisfactorily when there is only 1-2 people I am talking to), got those "special interests", but the major problem has always been stereotypical movements and stimming, something that defines my life to a very significant extent.

Upon all the tests and interviews (incl my partner and mother) the assessor confirmed ADHD and ruled that I currently don't meet enough criteria for ASD (e.g. only eye contact issues against a relatively well developed ability to read cues isn't enough to meet A2, while insufficient dependence on routine and sensory specificities are too mild for B (and the special interests are much less expressed than they used to be). That said, he also told me that on the basis of my childhood investigation I should definitely have received a formal ASD diagnosis as a kid, but now things have sufficiently smoothed out and it's ADHD that impacts my life the most.

So I was thinking... It's not that I'm chasing a formal diagnosis (although I find the label helpful to bring things home and have a road map of what I can change and what I have to accept), and what he said to me privately (that I'm def on the subclinical part of the spectrum) provides a relieving and illuminating explanation on why I've been struggling on multiple fronts all my life (even aside from ADHD).

It's true that my support needs are quite low, I'm virtually autonomous, yet my partner is soon gone to work in another country, and I am afraid my life will quickly fall apart in without his structuring presence. So, I'm not that sure, maybe there is supportive infrastructure in place that I'm missing out on this way?

Do you think it's a justified decision (also in terms of making the support infrastructure more accessible to people whose needs are higher by excluding relatively mild cases like mine) to not formally diagnose ASD when the criteria have definitely been met in the past but one can make the case that I'm too well adapted, despite the prominent stimming issue and other specificities and anxieties they generate?

Thanks a lot for your thoughts!

In my opinion, DSM-V is a crock. It was simplified, de-offensivized, and politically corrected to the point of being virtually useless. Take my example. I have a tested cognitive score (Wechsler Adult Standard) in the 99.95+ percentile. You would think this makes me ASD1. Yet, I am also nearly non functional socially, which should make me ASD3. So, Which is it? ASD1 or ASD3? Or do you strike an average and call me ASD2? DSM-V makes no provision for this.

There are several online quizzes you can take to help you evaluate yourself. Aspie Quiz and RAADS seem to be the most used. The opinion of one person is simply the opinion of one person. I would not rely on this as the end all conclusion.

 

[Neonatal RRT]

Editorial: Is autism a biological entity?

www.ncbi.nlm.nih.gov

The above article is (1) an editorial, and (2) written from the perspective of psychiatrists, as someone who studies and treats behavioral conditions. In other words, someone who is primarily focused upon symptoms, not causes. So, take that for what it's worth, but in the end, summed it up well with the statement, "Consequently, research independent of DSM-5 ASD criteria that adopts a new autism diagnosis such as prototypes, or explores a new causal model of autism, or develops transdiagnostic endophenotypes, must be encouraged." However, this is not new in thought, nor adds to our knowledge. (1) The Autism Genome Project very eloquently demonstrated the genetic and epigenetic variability and potential "risk factors", (2) we've known about different autism phenotypes and co-morbidities for quite awhile, and (3) how these phenotypes present from a genetic, anatomical, and imaging perspective.

As I have suggested several times here, we need to get this diagnosis out of the psychologist and psychiatric office and into the neurologist and geneticist office, or at the very least, a "trans diagnostic" process where all three or four are involved. Just from everyone's experiences on the forum with regards to "official diagnosis", there isn't much consistency other than "checking the boxes" in the DSM, which, depending upon how the process is done, can be rather subjective. Some people have a rather comprehensive and thorough process of multiple tests, cognitive performance, and interviews, and yet other people, not so much. Hence the questioning nature in the above article.

I don't have any doubt that autism exists, it is a biological entity, but what I am questioning is the diagnostic process that, in some cases, is so limited that it only presents more questions than answers. Put me in an MRI, let's to a PET scan, let's look at a diagnostic ECG, let's draw some blood and do a comprehensive, thorough genetic analysis, etc.. I want to know these things. I want to see my sensory issues as represented on a scan,...this is what tinnitus looks like, this is what Visual Snow Syndrome looks like, this is why your emotional centers are impaired, where my high and low conductivity and connectivity is, etc. and I think, collectively, given enough sample size, it would be most helpful in stratifying and identifying different autism phenotypes.

Signs and symptoms are not helpful.

 

[tazz]

@Neonatal RRT Can I ask, you appear to have a very good scientific understanding of autism research. You've got access to and you understand scientific papers on the topic. Is this stuff readily available to the public? Or as a medical professional do you have access to scholarly articles and peer reviewed journals that I don't? I'd really like to get stuck into the details of this but either this stuff is not easily available on the internet, not readily identifiable among all the dross, or my googling skills are not as good as I thought they were.

 

[Neonatal RRT]

@Neonatal RRT Can I ask, you appear to have a very good scientific understanding of autism research. You've got access to and you understand scientific papers on the topic. Is this stuff readily available to the public? Or as a medical professional do you have access to scholarly articles and peer reviewed journals that I don't? I'd really like to get stuck into the details of this but either this stuff is not easily available on the internet, not readily identifiable among all the dross, or my googling skills are not as good as I thought they were.

As a medical professional and educator for decades, I have learned to become quite proficient at knowing the "key words" during a literature search. I can pull dozens of "key articles" within a few minutes on just about any topic. I also dig into the little details of the methods and specifics of the experimental design, as often these details are most important when it comes to teasing out whether or not I can actually use it in my practice. I also understand how statistics are used and whether or not there was an inherent bias during data collection. I use PubMed and Google Scholar like most people. However, I do have special access (using my work computers) to some articles either because my hospital has paid for a corporate account or can obtain articles from other sources by requesting it from my health sciences librarian.

 

[MNAus]

As I have suggested several times here, we need to get this diagnosis out of the psychologist and psychiatric office and into the neurologist and geneticist office, or at the very least, a "trans diagnostic" process where all three or four are involved.

I think this, combined with many governments forming decisions on financial aid based on the diagnosis, is the nub of the problem. There has been an attempt to equate many different things: how strongly the phenotypes have been expressed, how much of an impact this has on living and development in an uncompensating individual, and what is the net result on QoL when the individual compensates for these (masking, avoiding, adjusting, etc). Naturally these are not the same, but get conflated as we move between assessors for benefit/support payments, psychologist/therapists, psychiatrists, neurologists.

ETA: One other things that I think is overlooked is the price people with ASD pay for the compensatory actions. It would appear I suffered from a number of shutdowns over the years. Like many people diagnosed late in life I had developed a whole host of compensatory actions. I'd avoid career paths that would increase exposure to situations I would struggle in, I'd spend hours trying to work out the patterns behind people's responses so I could give appropriate answers. This was not "masking" per se, it was me developing life skills, though masking was one of them.