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What would a diagnosis mean to me?

MTA-P

Member
It's honestly about 50/50 whether I am on the spectrum. I had a long post listing the evidence for and against, but I deleted it in favour of this simple question. I do have ADHD, my wife has ADHD, and is also on the spectrum, and she says something like 50 percent of people with ADHD are on the spectrum, which lead me to wonder... I do have some autistic traits, I also have some very non-autistic traits.

Whenever someone asks if they have ADHD, or whether they should seek a diagnosis, I always say that what they need to ask themselves what a diagnosis would mean to them. Getting a diagnosis as an adult is hard... If you don't have any support needs, and you don't particularly identify with the condition, then why bother? In this regard, I have always considered the possibility that I am on the spectrum to be a non-issue; I am low-support, and I identify way more with ADHD than I do the autism spectrum. But in the season for new years resolutons, I have started to question this.

See, one of those autistic traits I do have is extreme social... let's say... difficulties. I don't really have any friends, apart from my wife's friends. That's no way for an adult to live. Plus, with her being on the spectrum, I can't give her the alone time she needs. So, is there a possibility that with a diagnosis, there's be some sort of treatment that might make this a little easier for me? Of course I understand that there's no medicinal treatment... there's no pill I can take to make this easier, but not all treatments are medicinal.

Or then there's just the possibility that simply understanding my place on the spectrum would help... That was my experience with ADHD... For all the treatments and therapies, the most significant thing that helps is simply the understanding that you have the condition, and the ability to see issues framed by that.

My wife suggested that I try a self-diagnosis on for a while, and see if it fits, like trying on a new dress. But I haven't taken it out on the road yet. I am just sitting here on the couch watching Youtube videos about the history of video composite cables, thinking "this is because I am autistic, and it's okay".

There is also the strong possibility that I am misunderstanding social difficulty as an autism trait... My wife doesn't have any trouble making friends.

So, the question is: what did a diagnosis (even self-diagnosis) mean to you guys? Did things get easier when you were diagnosed, or began identifying with the spectrum? Did that open doors to treatments you could receive, or strategies you could use?
 
Welcome to the forums.

An actual diagnosis isn't really all that important to most people, understanding yourself and why the world affects you the way it does is what most of us need. That's where this forum is very helpful.

I didn't get a diagnosis until I was 55, and I got that specifically for the purpose of getting a disability pension. It did also give me a sense of vindication and validation, but the emotional high from that didn't last very long.
 
Self-diagnosed at age 55. Have not sought to get a formal diagnosis as I view this no differently than anyone coming to the conclusion they're not heterosexual. Plus I'm retired and never considered a need for government benefits over such a condition. I'm just grateful to have realized even at this late date who- and what I am. Not to mention that nearly everyone here who has given it so much thought went on to achieve that formal diagnosis. Though it's not always a simple- or linear process.

The good news for the OP is that they don't appear to be American (spelling). Here it really comes down to whether you are seeking government benefits. If so, you must be formally diagnosed. Though in doing so you may be exposing yourself to things like employment discrimination and attempting some types of accomodation to enhance your ability to do your job. In other nations, one has considerably better protections IMO. Locally in my state of Nevada, formal recognition or treatment of autism seems to be limited to children. Where few people seem to grasp that as autistic children, we grow up to also become autistic adults. Very frustrating at times.

Composite & component video cables. Yeah...me too. Lot of techies here. ;)

Welcome to Autism Forums.
 
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I am forum diagnosed.

I came here unsure about how to understand my brain, but I no longer wonder if I am autistic. Now, I just wonder if I am more ASD1 or ASD2.

I joke about being forum diagnosed, but there is truth behind my jest. I related so much to peoples’ experiences that I gained great understanding for my past, present, and my future.

My psychiatrist agrees that I am autistic and had me take several of the tests, but we agree that pursuing a formal diagnosis will not be much help to me.

Learning from forum members has been a very powerful help indeed.
 
i'm self-diagnosed autistic with adhd and alexithymia (with the aid of a psychologist i started seeing in the summer of 2022)

diagnosis has been incredible for me personally, because it has given me a framework to better understand myself and has helped me to come up with ways to support myself more.

as far as trying it out goes, its interesting. i guess i might say i'm still in the "trial period" in some ways, because i havent told many people, so its mostly just been helpful for me, myself and i. while some friends do know that i'm nuerodivergent, most don't. i find myself getting more comfortable telling people why i am wearing earplugs, or why i have a couple sets of clip on sunglasses, but its still pretty nerve wracking to think about announcing it to a group.
 
Welcome!

I'm going to copy one of my recent posts here:

While I occasionally referred to myself as an aspie or on the spectrum during my discovery phase, it was not until after my formal diagnosis that I was fully comfortable in doing so, and after having read a number of memoirs, blogs, and forum posts, to participate in the discourse and share my experiences and thoughts as well.

My main concerns with labels is when they're given to children who may not be in a position (or given respect by adults) to explain things themselves, and so they may end up getting boxed into what someone else perceives as the meaning of a label, which could both be stigmatizing and infantilizing. My first label, when I was 6 or 7, was being identified by a teacher as being "shy" and that I just needed to talk to my peers more. I was one of those kids that would watch others play, but be hesitant to ask to join in. Of course, in hindsight, shyness wouldn't really be correct in that I wasn't so much insecure, or worried about rejection - it was more so that I was oblivious to the social norm that it's okay to approach someone you didn't know, introduce yourself, and ask to join in on something.

To address one of your points, during the diagnosis stage (which of course it's up to you if you wish to pursue or not - self-diagnosis is quite accepted here), there were times where I was sad when I looked back and realized, for example, that there were some implied offers of friendship that I had missed out on. But I felt less alone and less sad when I read others' accounts (the first being Liane Holliday Willey's Pretending to Be Normal) and realized that it's not just me, and that there are many others "in the same boat" so to say.

Being part of this community has also been quite helpful. While our experiences and backgrounds are quite different, and sometimes there are things where there may be significant differences of opinion, we're generally quite good at being able to put those aside and instead find the commonalities that we can share in, successes to celebrate, and doing our best to support each other.

And so with that, best wishes on your journey of self-discovery and see you around. :)
 
The best thing about a diagnosis, is that you begin to understand your life, and why you made the decisions you did. I was diagnosed at age 40 with AD(no H)D. I thought that explained everything, except I soon realized it didn't. At age 60 I was referred to an autism diagnosis by a jobs counselor. The results came up with Asperger Syndrome, and PDD-NOE. I was shocked at first, but soon accepted it because it explained all of my life. What I have not yet accepted or really come to terms with yet is the damage caused by not being diagnosed earlier.

There is nothing wrong with self diagnosis. I suggest Aspie Quiz and RAADS. Both are available online. The advantage is that if you do not like the results (either way), you can say it is not official and ignore it. An official diagnosis can get you some benefits (or not). I was denied disability because I had a work history. A poor one, and long gaps between jobs, but since I worked, it was deemed not a disability. On the other hand, it becomes a part of your permanent record, and many people do not want that.

Ultimately, it is your choice.
 
It's honestly about 50/50 whether I am on the spectrum. I had a long post listing the evidence for and against, but I deleted it in favour of this simple question. I do have ADHD, my wife has ADHD, and is also on the spectrum, and she says something like 50 percent of people with ADHD are on the spectrum, which lead me to wonder... I do have some autistic traits, I also have some very non-autistic traits.

Whenever someone asks if they have ADHD, or whether they should seek a diagnosis, I always say that what they need to ask themselves what a diagnosis would mean to them. Getting a diagnosis as an adult is hard... If you don't have any support needs, and you don't particularly identify with the condition, then why bother? In this regard, I have always considered the possibility that I am on the spectrum to be a non-issue; I am low-support, and I identify way more with ADHD than I do the autism spectrum. But in the season for new years resolutons, I have started to question this.

See, one of those autistic traits I do have is extreme social... let's say... difficulties. I don't really have any friends, apart from my wife's friends. That's no way for an adult to live. Plus, with her being on the spectrum, I can't give her the alone time she needs. So, is there a possibility that with a diagnosis, there's be some sort of treatment that might make this a little easier for me? Of course I understand that there's no medicinal treatment... there's no pill I can take to make this easier, but not all treatments are medicinal.

Or then there's just the possibility that simply understanding my place on the spectrum would help... That was my experience with ADHD... For all the treatments and therapies, the most significant thing that helps is simply the understanding that you have the condition, and the ability to see issues framed by that.

My wife suggested that I try a self-diagnosis on for a while, and see if it fits, like trying on a new dress. But I haven't taken it out on the road yet. I am just sitting here on the couch watching Youtube videos about the history of video composite cables, thinking "this is because I am autistic, and it's okay".

There is also the strong possibility that I am misunderstanding social difficulty as an autism trait... My wife doesn't have any trouble making friends.

So, the question is: what did a diagnosis (even self-diagnosis) mean to you guys? Did things get easier when you were diagnosed, or began identifying with the spectrum? Did that open doors to treatments you could receive, or strategies you could use?
Some people find the diagnosis life-changing. An "Aha!" moment that suddenly brings so many things into focus. I spent 60 years before I even thought about autism. It could have improved my life if I had had that knowledge when I was younger. OTOH, when I was a kid, nobody knew how to help.

For me, a lot of things suddenly made sense. Having my life make sense matters. I now know what not to fight and can focus on the things I can control.

When I was a child, everything was explained as being my fault, the result of my bad choices, my own perversity, antisocial behavior, etc. The idea that this is just how I was built and not how I chose to be didn't exist. And if it had, I would have been written off as born bad. It was not a kind period for neurodiverse people.

Getting the diagnosis today would be a huge help for a young person because they can learn better ways to handle it. Alternate educational opportunities open up. The adults around them might just see their behavior in a different light.
 
For me, the diagnosis was more about understanding myself and my difficulties with people and keeping jobs, though I was also going through a burn-out and needed help at the time. It allowed me to be kinder and more forgiving of myself.
 
I'm a bit unusual as I have been diagnosed with autism (ASD1) for almost my entire life.
Like you, I have some very autistic traits (special interests are my most pronounced one, and I tend to ramble, infodump, and be extremely verbose in writing, while having difficulty with some forms of verbal communication.) And, like you, I also have some stereotypically "non-autistic" traits (highly extroverted, frequently use sarcasm and satire, lack of difficulty making friends for the most part, full independence in life, full-time career.)
But it's important to remember that not all or even most autistic people fit into the same box. There are many, many autistic people on this forum who are extremely successful in life, and independent, even though a lot of the current literature on autism would make you believe otherwise.
And there are also a lot of other autistic people who need a lot of support, and that's also totally okay! It is a "spectrum," after all.
You will find people of both types on here and they all have incredibly meaningful advice and wisdom to share.

My time on this forum has shown me how important it is for me to connect with other autistic people. Whether that takes the form of an official diagnosis or not, doesn't matter. It's the connection and friendship that's important to me and it has been so vital to my wellbeing to make autistic friends.
I think pretty much anyone else on here would say exactly the same.

So it's less about the diagnosis (official diagnosis, self-diagnosis, awaiting diagnosis) and more about YOU as an individual. This forum is a great place for you to do some self-discovery, make connections, and learn and educate yourself. There are so many individual stories and experiences here and they are all highly valuable. Doesn't matter if the people have an official diagnosis or not.

Ultimately, it's up to you to decide if the formal diagnosis is important to you and who you are as a person. Some people join here and decide they don't even need to pursue a formal diagnosis because they feel so welcome and at home here regardless, and learn so much about themselves.

For me, the official diagnosis had both pros and cons. I learned early on that revealing it to some people wasn't in my best interest. It didn't particularly open me up to a lot of helpful services in life, especially since I didn't face some of the more profound difficulties that some do. That also made me feel like an imposter and led to some people doubting the validity of my diagnosis.
But finding the people on this forum was the best thing my diagnosis has ever done for me. If I wasn't ever officially diagnosed, I may never have even researched it because it may have never occurred to me. And in that case, I probably would've just felt weird and different for the rest of my life and not known why.

My advice for everyone who joins here is always "Do what's best for you and what will make you the happiest."
Hope that was helpful.
 
I went through the diagnosis process when I was a teenager, so I have had times to come to understand and accept what an official diagnosis is. For me, the diagnosis was not easy to accept. It had both pros and cons. The realization that I wasn’t normal, that I would never be normal and that I would never fit in was not an easy thing to accept when you’re a teenage girl wanting all these things. Over time, I have come to accept that my diagnosis just helps me to understand why I do certain things, why things are difficult for me at times, what I can do to learn and grow — Having An official diagnosis helped open me to specific support which was pretty important when I went through University and even now, I have finally now got access to an Autism support place. I dont like having ASD, but I also have to learn to accept that it’s a part of me and if theres support in place to help, I should have access to it without worry.

However, having a diagnosis also gives you a label. And I think sometimes, having a label is the only thing that some people can see. My ASD at times when people know will lead them to treating me like I am much less capable. I have lost friendships. I have been laughed out when I have had a meltdown in public (I only have had a meltdown in public once but it made me realize that I had to learn strategies to better avoid it). Sure, there’s obstacles that I have over come and sometimes they are much easier to get over with support but they can also be a challenge when people know. And for that, I will try to avoid telling people of my ASD (i much prefer them to think me eccentric or something) since there’s still a lot of prejudice.

TL/DR: You do what you think is best for you. Do you think having a diagnosis is useful to you?
 
understanding yourself and why the world affects you the way it does is what most of us need.
@MTA-P, Welcome. @Outdated Nailed it with that phrase above.

I took a "deep dive" into "all things autism", especially from an anatomical, genetic, and physiological perspective. This in order to understand the psychological and psychiatric perspective. Moreover to understand and accept that I am different, I am not a neurotypical, and to put things into, again, perspective. I have my persistent sensory, social, and communication issues, but knowing what I know now, I have embraced it because I would not be where I am now without my autism. I am not going to do things in a neurotypical fashion. I have my own path, and I am better for it. Sure, at 55 years old, my life is full of should have, would have, and could haves, but I have made a lot of good decisions that others thought silly at the time, and I am reaping the rewards. I never look at my life and my accomplishments with this idea that I did what I did despite my autism, but rather because of my autism.

Now, if you need a professional diagnosis in order to obtain disability, assistance, or work accommodations, that is one thing. Otherwise, as many have discovered, specifically those who don't need assistance, what you need is an understanding of yourself in order to better navigate your world.
 
Being that I was self diagnosed and now formally diagnosed, I can say for myself personally, that I am glad to have got that formal diagnosis, because now, everyone just accepts it and I have a card, that I printed up myself, to hand to people and can only do that, because I have been formally diagnosed.

It is subtle ways that it is beneficial.

When I got my diagnosis all the expert said was that he wished me much luck, knowing how difficult life is, but not once have I received any information on what can help; I have to be the one to ask, which is so hard to do.

Although I am not an expert, knowing someone who's daughter has ADHD, we both agree that it is just not possible to have both; there are similarities, but also marked differences.
 
The best thing about a diagnosis, is that you begin to understand your life, and why you made the decisions you did. I was diagnosed at age 40 with AD(no H)D. I thought that explained everything, except I soon realized it didn't. At age 60 I was referred to an autism diagnosis by a jobs counselor. The results came up with Asperger Syndrome, and PDD-NOE. I was shocked at first, but soon accepted it because it explained all of my life. What I have not yet accepted or really come to terms with yet is the damage caused by not being diagnosed earlier.

There is nothing wrong with self diagnosis. I suggest Aspie Quiz and RAADS. Both are available online. The advantage is that if you do not like the results (either way), you can say it is not official and ignore it. An official diagnosis can get you some benefits (or not). I was denied disability because I had a work history. A poor one, and long gaps between jobs, but since I worked, it was deemed not a disability. On the other hand, it becomes a part of your permanent record, and many people do not want that.

Ultimately, it is your choice.
I am surprised that you suggest specific quizzes. Going through it with my wife, and with my own confirmed form of neurodiversity, I have noticed that a lot of those quizzes are worse than bunk. They ask about autistic traits from the perspective of non-autistic people, so it's often hard for autistic people to relate to those traits, as they're described on the tests. Plus, they're bad for people like me who have some very autistic traits, and some very non-autistic traits (which must be common, autism not a box). The fewer autistic traits you have, the less autistic you are, according to a lot of those tests, which neglects to consider that the autistic traits you do have may be significant.

But I just googled RAADS, it looks pretty thorough, maybe this will give me something concrete.
 
I am forum diagnosed.

I came here unsure about how to understand my brain, but I no longer wonder if I am autistic. Now, I just wonder if I am more ASD1 or ASD2.

I joke about being forum diagnosed, but there is truth behind my jest. I related so much to peoples’ experiences that I gained great understanding for my past, present, and my future.

My psychiatrist agrees that I am autistic and had me take several of the tests, but we agree that pursuing a formal diagnosis will not be much help to me.

Learning from forum members has been a very powerful help indeed.
I get it... 'self-diagnosis' is not the dirty word it used to be. back in the 90s, the joke was that everyone who read about ASD1 became convinced that they had it. Nowadays we have social media, and when we research autism, we can hear about the real lived experiences of other autistics, which we can see if we relate to. I bet self-diagnoses are pretty much just as accurate as official diagnoses these days.

Unfortunately I don't think doctors have caught up. I think they still think self-diagnosing is when you're huddled over WebMD at 3am surrounded by empty Red Bull cans imagining brain tumour symptoms.
 
Being that I was self diagnosed and now formally diagnosed, I can say for myself personally, that I am glad to have got that formal diagnosis, because now, everyone just accepts it and I have a card, that I printed up myself, to hand to people and can only do that, because I have been formally diagnosed.

It is subtle ways that it is beneficial.

When I got my diagnosis all the expert said was that he wished me much luck, knowing how difficult life is, but not once have I received any information on what can help; I have to be the one to ask, which is so hard to do.

Although I am not an expert, knowing someone who's daughter has ADHD, we both agree that it is just not possible to have both; there are similarities, but also marked differences.
How does it follow that one can't have both ADHD and autism? The way I see it, there's a Venn diagram... a lot of overlap... a lot of symptoms could be either, but lots of symptoms that are distinctly one but not the other too.

My wife definitely has both, because autism just wouldn't explain her ADHD symptoms. Likewise, with me, ADHD just wouldn't exolain my autism traits.

Plus, the standard treatment for ADHD is a stimulant that's related to meth, with a high potential for abuse. But I couldn't abuse it if I tried, because it just makes me feel normal and clear-headed. You're definitely atypical if a stimulant doesn't stimulate you. To me that ends the possibility that I don't have ADHD. So if I have autistic traits as well, what am I to make of that?
 
I get it... 'self-diagnosis' is not the dirty word it used to be. back in the 90s, the joke was that everyone who read about ASD1 became convinced that they had it. Nowadays we have social media, and when we research autism, we can hear about the real lived experiences of other autistics, which we can see if we relate to. I bet self-diagnoses are pretty much just as accurate as official diagnoses these days.

Unfortunately I don't think doctors have caught up. I think they still think self-diagnosing is when you're huddled over WebMD at 3am surrounded by empty Red Bull cans imagining brain tumour symptoms.
This is a composite reply for your last two messages. There are all sorts of tests and quizzes intended to self diagnose autism out there. The Aspie Quiz and RAADS are well regarded here as useful and reliable. Also there are a lot of people here self diagnosed, nobody looks down on them. My opinion (based on personal experience and observation) is that most doctors today don't know how to recognize or diagnose autism and never did. And the latest DSM has simplified and politically corrected everything to the point of uselessness (alcoholism is now Chronic Ethanol Abuse Syndrome, sociopath is now Anti Social Personality Disordere).
 
I went through the diagnosis process when I was a teenager, so I have had times to come to understand and accept what an official diagnosis is. For me, the diagnosis was not easy to accept. It had both pros and cons. The realization that I wasn’t normal, that I would never be normal and that I would never fit in was not an easy thing to accept when you’re a teenage girl wanting all these things. Over time, I have come to accept that my diagnosis just helps me to understand why I do certain things, why things are difficult for me at times, what I can do to learn and grow — Having An official diagnosis helped open me to specific support which was pretty important when I went through University and even now, I have finally now got access to an Autism support place. I dont like having ASD, but I also have to learn to accept that it’s a part of me and if theres support in place to help, I should have access to it without worry.

However, having a diagnosis also gives you a label. And I think sometimes, having a label is the only thing that some people can see. My ASD at times when people know will lead them to treating me like I am much less capable. I have lost friendships. I have been laughed out when I have had a meltdown in public (I only have had a meltdown in public once but it made me realize that I had to learn strategies to better avoid it). Sure, there’s obstacles that I have over come and sometimes they are much easier to get over with support but they can also be a challenge when people know. And for that, I will try to avoid telling people of my ASD (i much prefer them to think me eccentric or something) since there’s still a lot of prejudice.

TL/DR: You do what you think is best for you. Do you think having a diagnosis is useful to you?
Here's what I hate... I ask people to treat me like they would anyone else. But what they hear is "treat me harshly", when what I mean is "cut me the same slack you would anyone else".

When neurotypical people make mistakes, forget things, or turn up late, everyone just shrugs and ignores it, because nobody's perfect. When I make mistakes, forget things, or turn up late, it's 'the ADHD guy can't get their **** together...'. Meanwhile people don't have the awareness to understand that cutting me some slack isn't giving me special treatment, they'd cut anyone else that slack.

Still better than having an "anxiety disorder" though. Anxiety is an emotion everyone experiences sometimes. But when you have an anxiety disorder, you can't experience that emotion without it being labelled a panic attack. I consider my "anxiety disorder" to be ADHD misdiagnosed, so I don't identify with an anxiety disorder, and I feel comfortable never mentioning it to anyone ever again.

I am actually a big believer in labels. I believe labels can help us understand who we are. Of course, as you point out, they can come with baggage, but that baggage is other peoples' judgements and preconceptions. In a perfect world, there just wouldn't be that baggage.
 
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Some people find the diagnosis life-changing. An "Aha!" moment that suddenly brings so many things into focus. I spent 60 years before I even thought about autism. It could have improved my life if I had had that knowledge when I was younger. OTOH, when I was a kid, nobody knew how to help.

For me, a lot of things suddenly made sense. Having my life make sense matters. I now know what not to fight and can focus on the things I can control.

When I was a child, everything was explained as being my fault, the result of my bad choices, my own perversity, antisocial behavior, etc. The idea that this is just how I was built and not how I chose to be didn't exist. And if it had, I would have been written off as born bad. It was not a kind period for neurodiverse people.

Getting the diagnosis today would be a huge help for a young person because they can learn better ways to handle it. Alternate educational opportunities open up. The adults around them might just see their behavior in a different light.
I hate how that works... people start seeing you as the one who makes mistakes, and all of a sudden, everything that goes wrong in your presence is your fault. It's just a cognitive bias that we're too blinkered to fix. And of course neurodiverse people make a lot of mistakes in a neurotypical world. So, a few simple mistakes, and you end up feeling there's something fundamentally wrong with you.

I am convinced that the neuroses we force on neurodiverse people are the thing that we'll look back on with shame.
 
The best thing about a diagnosis, is that you begin to understand your life, and why you made the decisions you did. I was diagnosed at age 40 with AD(no H)D. I thought that explained everything, except I soon realized it didn't. At age 60 I was referred to an autism diagnosis by a jobs counselor. The results came up with Asperger Syndrome, and PDD-NOE. I was shocked at first, but soon accepted it because it explained all of my life. What I have not yet accepted or really come to terms with yet is the damage caused by not being diagnosed earlier.

There is nothing wrong with self diagnosis. I suggest Aspie Quiz and RAADS. Both are available online. The advantage is that if you do not like the results (either way), you can say it is not official and ignore it. An official diagnosis can get you some benefits (or not). I was denied disability because I had a work history. A poor one, and long gaps between jobs, but since I worked, it was deemed not a disability. On the other hand, it becomes a part of your permanent record, and many people do not want that.

Ultimately, it is your choice.
P.s.
By the way..., before I was diagnosed with ADHD, I was always careful to call it ADD, as I am not hyperactive either. The psychiatrist who diagnosed me said that they don't use the term 'ADD'; he said that it's just one condition called ADHD, and there's an understanding that not everyone has all the symptoms, so it's still ADHD, even if you're not hyperactive. That makes sense to me; a lot of people call what I have ADHD-inattentive-type, but if you had the flu, but weren't coughing, they wouldn't say you had the flu-non-coughing-type. My concern with dividing up these conditions into lots of little subtypes is that as the boxes get more specific, they'll get smaller and more exclusionary, and there'll be more and more people who don't fit into any box.

I don't mean to lecture you. Hell, I am no expert; I don't know any better than you do. But that perspective makes sense to me. What makes sense to us as individuals is what's important, so if the ADD(no H) perspective makes more sense to you, that's fine.
 

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