I think I found my label

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Yes I can see your reasons for the interest in self diagnosis. ADD and ADHD are genetically linked to ASD although they are currently discrete and seperate diagnoses.

ADD is primarily linked to impulsiveness and hyperactivity. It's kind of similar to neurological traits typical of our brains when we were older teens but we don't quite grow out of it.

Having a job, marriage and soon 3 kids it sounds like you seem to be managing your traits and potential symptoms (pre-assessment) so (yes) you are in a position to ask yourself what next?

Would a formal diagnosis help in getting professional help identify the triggers for your stress? or do you know what the underlying triggers and can you try and address these yourself? This perhaps is the first question in terms of goals.

Yes, I'm really wanting to find out. I believe it's best to keep ADHD and autism separated as the difficulties are on completely different levels. It's interesting though that most kids who "lose" their ASD diagnosis from intensive ABA still have ongoing problems like ADHD.

Well, I've just completed the first meeting last week. With the information I've given them they're now going to decide whether or not to pursue the investigation any further. I asked would they let me off if they thought it just wasn't worth the time and resourses associated with it. She replied that they'd probably want to continue looking into my case based on the things I'd just told them.

I think the meeting took 2h and they had expected 90min. Thinking back on the interview I believe I came across as someone having a lot of trouble staying on topic and talking excessively about rather random subjects.

There was also a test for Asperger included that I had to fill in. The same one I've been doing several times on the internet. I still don't know whether I'd prefer going to the theatre than a museum

I'm managing life OK but my wife is getting awfully annoyed with me constantly forgetting about things, misplacing stuff and can't get started in time and can't finish up things. So it's mainly the inattention that needs addressing. They're talking about meds so that's a possible place to start IF I'm qualified for the diagnosis. From here it will take some time before we make the next step so next update will probably be around 6 months from now

I also have to mention the rather huge attention gap between me and my sons. They can spot every detail while I can't notice s**t It's a funny feeling when they outperform me.
One quick example:

Oldest son tries to say train but can only get 'trh' out while he's looking at an alphabet poster with vehicles representing each letter. So I try to correct him as there's a Tractor where the T is. Then he jumps up and points to a train located on the X letter (X2000 is the name of a train in Sweden - that's how they solved that). So I had totally missed the train but noticed it.

The label that comes first for us all is human being.

I had my assesment right after Christmas and got diagnosed with Autism in January.
Really quick process, due to that I did it privately and not via Vårdcentralen etc.
I had had suspicions of Autism for some years, since my son has a diagnosis.

The main reason for me getting diagnosed was because I had sometimes a feeling that people didn't believe me, at least not fully, when I "blamed" possible Autism when I misunderstood or acted "weird".
And I believe that I can get some support at work, like payed noice reduction headphones.
Also, I think that having a diagnosis is helpful when in contact with psychologists and possibly other parts of the health system.

I believe the quality of the psychiatrists can vary quite a lot depending on where you're located.
The psychiatrist who assessed me is currently teaching others in Blekinge about autism, since they typically don't know much about the "condition".

/Mats

I think do what makes you comfortable, If a diagnosis gives you a sense of peace then do it. I don't think kids actually "lose" autism but they learn social skills and mask their urges/compulsions in order to fit-in as they get older. My daughter is still very ASD but she's much better at masking now then when she was in primary school.

I almost never feel confident dealing with people within health care. Autism and ADHD requires dedicated people and I believe we only have a handful of these people in our country.

We also need to remember we are "pioneers" right now. The condition has been known for such a short time. No real follow up from young age etc.

I am doing it through Vårdcentralen. We did it private with our first son and it costed us a lot. Not that I care about that money now, and I do believe they were put to good use. Somehow I cannot help but think these people are ripping us off. Why the need of charging 6000 euro for a diagnosis? I would really like to know.

So, I'm also in the same situation as you. Have had a feeling of being slightly different without really knowing why that would be. Blaming myself for being the way I am. And now everything is put into new light and all these comments regarding my father such as "no social skills", "special walking gait", "No friends", "can't stand him", "constant pain in the ass". It's interesting and a bit shocking at the same time.

A foot note... I was called in for a urine test as I couldn't do it on the first occasion. They told me it was going to be on another location. I was so concerned with getting the day and time right that I completely missed out on the location. Turned up at the wrong place. Now when reading my journal I see they added that to my file.




I'm a bit intimidated by the process. In my journal they wrote down several things that I find a bit disturbing such as me laughing out loud during the MINI interview, me having a bad temper and also the emphasis on children being involved in the picture. I think it comes across as if I'm a complete psycho and my children are in danger.

They've also added possible autism to the journal. I have said I don't fully see myself having autism as I don't have any trouble understanding this "unspoken language" that autistic people can't follow.

It would be interesting meeting your daughter. I don't have that much experience from autistic girls. The ones you see on youtube seem far more normal than myself... Would also like to know how these high iq girls are.

6000 euros is a fair bit more than what I payed, around 2500, still not cheap. I wonder if it's more expensive with children, perhaps they need/want more interview time and tests to assess them?

/Mats

I'd say it's actually less, especially if it's classic autism. They knew within one minute he was autistic and all these papers that had to be done was just a formality, perhaps just checking just HOW serious his condition was.

1. Brief meeting to determine if we should pursue.
2. The Ados play test (?) Not sure I remember correctly if this was already done in the brief meeting.
3. Interview... probably checking the Vineland protocol.
4. Natural environment check up (kindergarten). Total waste of time. They showed up for 40 minutes to see what they already knew. On paper it was suppose to be half a day worth of work - 80% of that was traveling.
5. Go and get your results.

So we got our diagnosis from the best man in the country. Very close friend of Lovaas and he's also promoting ABA. His main area is autism but he also know a lot about mental conditions in general. We learned about him after watching Morgan, a kid diagnosed with autism at age 2,5 - lost all his skills and regressed into autism. After treatment he started coming back. They continued this treatment for several years until one day the autism "was gone".

https://www.youtube.com/watch?v=b3favBz9qjw

So this was of course new to us then and we put all our hope into that. Wish I knew how to add subtitles to it so the rest of the forum could watch it.

The guy in blue in that video is Morgan as an adult. No sign of autism. He don't remember feeling anything bad from the treatment and he don't feel anything from his autism, only sometimes it can appear as a diffuse feeling.
That sounds really awkward to me.

One thing to take from the video is how they describe the cure of autism as something you can't really define. You need to be sick to be cured. Autism has no bio markers, you only evaluate it depending on the behaviors they display. If they stop doing it, the autism is gone. And where did it go? That's a philosophical question.

They just don't know enough to state anything. They do whatever worked before because that's all they know. Sometimes it works, sometimes it don't.

Btw, what's up with your kid? Can you share his story?

Well, he's 23 now, so not really a kid anymore
I've mentioned him a couple of times in some threads, but I'd rather not go into too much detail.
If for no other reason, he may start using the forum (or may already be here) and I don't think it'd be fair of me to say too much.

/Mats

So now I've had a third party done the interviews and tests. Only missing the medical + parents interview and then I get back my results on the 21st of april. I was waiting to be scheduled for examination a year ago and they didn't have the resources to deal with it so I got a private agent to fix it instead, and I felt a lot more confident with them. The woman who interviewed me had a lot of experience and managed to turn every stone. After 40 minutes she said I was one of the most obvious ADHD cases of all her patients

The WAIS IV made me feel nervous because of my low self esteem. I'm still waiting on receiving feedback on that but it went pretty well. Nothing out of the ordinary in my weak areas Working Memory and verbal instructions. Verbal instructions combined with working memory were extremely bad though. Didn't last more than three-four questions. My strengths are the visual stuff. She said it's not very often someone goes all the way to the last one with the block design, and I also finished that one The matrixes was my favorite part. I had one terrible inattentive error that she asked me to correct just to check what had happened. Otherwise 100% correct.

I'm really wondering what I have gotten myself into now and what's going to happen next I would never have thought I'd have a neurodevelopmental condition, and now it's starting to look very much like so
I will return with the follow up.

And a quick follow up on this: we're having a daughter in 8 weeks You are a real Nostradamus Cyberdad

It is never too late to get insights into why we are as we are. Remember why you started the process. No regrets. Whatever you learn will be useful to you.

I've been sorely tempted to look into an assessment for myself lately. Some recent ADHD articles have struck really close to home for me (to my surprise) and the reason it interests me is that, unlike ASD, if the base neurological difference is ADHD, my "issues" might be helped with medical intervention. I'm finding all the coping mechanisms and compensations I've spent my life using are getting less effective as I age, and it would be really nice to not struggle so much with focus and staying on task. As I've noted in my signature, I've gotten comfortable that I'm likely "broader autistic phenotype," but while that answered a lot of questions, it never really solved anything. I run so hot and cold, mostly slogging along then having flashes of brilliance, but those happy flashes of brilliance happen less and less, while the slogs get more and more difficult to pull through.

My son is ASD but not my daughter; the two are clearly different in how they can read people, etc. My daughter entered the process of getting formal assessments for ADHD now that she is studying psychology at the university. We've assumed she is ADHD since she was 8 or so, but kept it off the school system radar because we didn't want to medicate her. She was smart enough to cover really well, and I really don't like medicating children unless absolutely necessary (even at 8, my daughter was involved in the decision). My family is lucky to be gifted with strong IQs, which has masked a lot, but can't answer all the weird things we've each wondered about over the years.

Congrats on the pending addition to your family. All human beings are miraculous, whatever neurology they get, and the process of discovering who she is will be a new adventure.

It sounds like we share a lot of feelings and experiences within this. I think it was age that put an end to my effort in trying to keep up with everything. Can't compensate for all my problems anymore. I'd really like to see you create a similar thread as this and go through with an assessment. You also get to know more about your brain ability - which is quite fascinating.

I've said I'll do a follow up on this on april 21st when I'm handed the results, but something happened today that actually changed everything I've known about myself and my family. Had a meeting with a psychiatrist - a title a thought was synonymous with psychologist...

I got to his office right in time but he was still having his late lunch so I had to wait outside for a little while. Came in and he asked if I was me and then opened up his computer. He then starts going through my journal making a quick summary

"So, you were called in for assessment as a young boy".

I get really totally confused, "No, that never happened, have you typed the wrong id?"
He just goes on reading, looking a bit concerned. Then he reads, "the patient didn't show up for assessment despite the school teachers recommendation/alarm".

And here I get more confused than I have ever been in my life, "You must have got this all wrong, I have not been called in for any assessment during my school years ".
The guy makes a slight smirk as if he's trying to make me understand there are things I don't know.

Apparently I have been a subject for this in my younger years, and my parents have refused to go through with it. Just like they did with my youngest brother. So they have always known something was up but chose to ignored it.

I also had a really great meeting with this psychiatrist who seemed to be on a totally different level of knowledge than any other professional I've ever met. I would describe the scene as someone stepping down from heaven to explain what is actually going on, because I obviously am too stupid to get the clues. The meeting was expected to last for about an hour and we went on for well over 2 hours.

He also gave me a pre-assessment based on all the information because of easter etc and he didn't want to keep me hanging. Autistic traits and ADHD clear as daylight. An "interesting fact" is my first diagnosed son also had his pre-assessment results handed/thrown in our faces the day before easter. So that closes the circle

So, soon I will be one of all people on here that get that late diagnosis. I would never had thought my story was actually so similar to many other people. The feeling of being different, the struggles... it all feels very overwhelming but at the same time like a huge relief.

I won't blame my parents for not telling me about this. I think it worked out ok for me in the end even though there were a lot of struggles from the mid teens. I know it's not easy to always make the right decisions and I also know my father wouldn't have like to go through with it even if he wanted it because of his social anxiety.

Tomorrow morning I'm going to call the archives to get a hold of my childhood journal. Perhaps all this is just so fresh right now that I don't know what to make of it.

^^^ That is really interesting, all the history.

As noted earlier, we hesitated with formal assessments for our kids for a variety of reasons. Ultimately I took the approach of getting the kids into the system enough to solve immediate and predicted issues, and then stopped. I wanted to leave my kids with options when they reached adulthood, and both appreciate that now that they are adults. I can't imagine not including the children in these discussions and decisions; it seems to me that people have a right to know about their numerology.

Finding the right professional makes so much difference. A lot of luck seems to be involved. It would make my decision easier if I knew a solid and affordable professional to work with. But I know from my experiences with my kids that finding that person is hard. Mental health and experts in neurological differences are so understaffed here right now; that is a giant barrier.

I'll probably end up debating myself on it until it doesn't matter anymore. That's always one way to make a decision.