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It all made sense when we found out we were autistic

bbc.co.uk

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Re: It all made sense when we found out we were autistic

#171

Post by cryptonector »

drefanzor wrote: post #137

I understand they have a disorder, and yeah, it's "not that bad", for SOME. But come on. My son has autism. He is 13, and still cannot speak. He has to have 24 hour care. I understand that autism is a spectrum, but realize that what they're talking about here is much different. It's like saying someone has a paralyzed pinky versus a being a quadriplegic.

I've only known people on the extremes of the spectrum. I don't know anyone who is clearly "in the middle". I do wonder if it is a spectrum or just two different spectra, because I agree that the extremes are not really comparable. My heart goes out to you. I hope your son catches up eventually.

Re: It all made sense when we found out we were autistic

#172

Post by cryptonector »

TomK32 wrote: post #82

Haven't got a diagnosis myself but I tick a lot of boxes for mild autism and a few articles I read about it 5 years ago (31 at that time) made me realize it's a pretty good explanation for me. I'm not surprised that women are diagnosed less, they are integrated into the social web of family and friends a lot better and from early on. I'm pretty sure I didn't have even a 10th of the social interactions my little daugh…

If you're a high-functioning adult, a diagnosis won't do much good -- you've already figured out what you needed to at least unconsciously. But suppose now that you have children. And one of your children is on the spectrum. If you know what to look for, you might save them and yourself a ton of stress.

Re: It all made sense when we found out we were autistic

#173

Post by zamalek »

_b2lj wrote: post #124
dkarl wrote: post #48

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interes…

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird". Before my diagnosis I remember breaking down in my school's counselors office b…

I just want to echo your story because it is almost identical to mine (right down to the incorrect diagnoses). I was bullied to the point where I developed a colossal thrombosis in my arm. We had no idea until I was 16, which is when my parents became aware of these types of issues.

I was lucky enough to get off the meds extremely quickly (2 weeks as I recall, I told my mother I hated them - she took me off after noticing how lifeless they made me). I was lucky enough to move countries, to a new school with fresh schoolmates and friends - somehow a school with the most beautifully accepting people you've ever met. With just that one chance that "normal" people gave me, I turned completely and you simply wouldn't believe that I am autistic today.

I've overcome a lot less than you and I am proud of it, I can't imagine how proud you must be.

Re: It all made sense when we found out we were autistic

#174

Post by cryptonector »

dingaling wrote: post #95
sidlls wrote: post #71

Earlier quoted context omitted.

For us the diagnosis is a formality and a means to another end: access to resources in our child's school, protection for him from punishing him due to behavior that is a result of his condition, and formal recognition by our insurer to ease accepting claims for his therapy.

> protection for him from punishing him due to behavior that is a result of his condition That's an interesting and problematic aspect. My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation.…

You have to deal with disruption. No doubt. A typical problem might be that the kid just isn't conscious of things like homework assignments: laziness, or ASD? If laziness, then discipline should help. If ASD then discipline won't help, but therapy might. Knowing really helps.

Having the right diagnosis is important. Who wants to end up taking powerful medicines for the wrong condition?? Sure, if you have no diagnosis then you won't take the wrong meds either, but that's not a reason to avoid a diagnosis.

Re: It all made sense when we found out we were autistic

#175

Post by cryptonector »

DanBC wrote: post #76
BadCookie wrote: post #36

Earlier quoted context omitted.

It's not standard to medicate for autism, FYI. The standard recommendation is therapy (Applied Behavioral Analysis, occupational therapy, and speech therapy are most common). One benefit of a diagnosis is that often your insurance company will cover more therapy. The right next step is to get an actual diagnosis, in my opinion. You might be off-base in your suspicions, or it may turn out that your child is more affec…

> It's not standard to medicate for autism, FYI Autistic people are routinely over-medicated, and that over medication one reason for the difference in life-span for autistic people.

After diagnosis? There are no drugs specifically indicated for treating ASD. You might find people on the spectrum getting prescribed ADHD meds, say, but I understand that's more of the exception nowadays.

Re: It all made sense when we found out we were autistic

#176

Post by cryptonector »

jeandejean wrote: post #145

"Five times as many males as females are diagnosed", but the problem is of course that women are not diagnosed enough... What about there is a big problem in our society that make males more prone to autism that we should fix first? That article seems to be political rather than informative to me.

It's mostly anecdotal. That's not devoid of value even if not very informative (because anecdotal). It could also be political and still be of value.

Re: It all made sense when we found out we were autistic

#177

Post by adrianratnapala »

_b2lj wrote: post #124
dkarl wrote: post #48

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interes…

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird". Before my diagnosis I remember breaking down in my school's counselors office b…

You are right about the importance of understanding problems.

But in your story, a lot of the problems came from people giving you (wrong) diagnoses. dkarl is saying what works for him is just working directly on the constellation of traits he has without looking for a diagnosis. True, things got much better for you when you got the right diagnosis of autism. But as i14ng points out below, autism is "just" a name for a for a constellation of traits similar to dkarl's.

It sounds like your case is a lot worse than dkarl's so I believe you that naming the syndrome was a good thing. But overall, would you have been better or worse off if society just made fewer psych diagnoses and you never had the right or the wrong ones, but people just helped you work directly on your traits?

Re: It all made sense when we found out we were autistic

#178

Post by TomK32 »

cryptonector wrote: post #172
TomK32 wrote: post #82

Haven't got a diagnosis myself but I tick a lot of boxes for mild autism and a few articles I read about it 5 years ago (31 at that time) made me realize it's a pretty good explanation for me. I'm not surprised that women are diagnosed less, they are integrated into the social web of family and friends a lot better and from early on. I'm pretty sure I didn't have even a 10th of the social interactions my little daugh…

If you're a high-functioning adult, a diagnosis won't do much good -- you've already figured out what you needed to at least unconsciously. But suppose now that you have children. And one of your children is on the spectrum. If you know what to look for, you might save them and yourself a ton of stress.

Already have one, perfect child, active, social, caring, chatty, curious, definitely nowhere near the spectrum. Which is a relief because on her mother's side there's a brother on the spectrum. But I'm able to spend a lot of time with my little family, so that makes it easy for me to grow with our child, make sure she doesn't feel rejected because I'm a weird guy.

Re: It all made sense when we found out we were autistic

#179

Post by TomK32 »

dingaling wrote: post #95
sidlls wrote: post #71

Earlier quoted context omitted.

For us the diagnosis is a formality and a means to another end: access to resources in our child's school, protection for him from punishing him due to behavior that is a result of his condition, and formal recognition by our insurer to ease accepting claims for his therapy.

> protection for him from punishing him due to behavior that is a result of his condition That's an interesting and problematic aspect. My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation.…

Disruptive behaviour is just the results, the cause might be exhaustion due to the classroom being to much for the nervous system. Over-sensitive hearing is one common symptom and for me it's hard to imagine how normal people manage to have a conversation in a room with more people having other conversations. Too many kids around, that's too many social interactions that are preferably avoiding. Allowing an autistic kid to stay back in the classroom and not being force to go out to play in the breaks is one solution I've read in a book. Shorter hours, less or no homework, less or no expectations in their learning progress can help.

Remember: Autists have to learn and cope with this new social situation first before they have the strength to progress intellectually. But even when the kid is normalizing, careful not to overwhelm them again, because they might use up all their energy for the school day and just break down at home.

School is a horrible place if there's the same treatment and the same expectations on every kid.

Re: It all made sense when we found out we were autistic

#180

Post by mercer »

dkarl wrote: post #135
emodendroket wrote: post #83

Earlier quoted context omitted.

Because getting the diagnosis explains what's going on, gives you access to a wealth of resources to understand things that were previously mysterious, and unlocks a community of people with the same condition as you who will understand. These testimonials talk about spending years in the wilderness with no idea why you don't fit in.

I guess I've already been taking advantage of some of the resources. I've read a couple of books by Temple Grandin and read a lot of things people on the spectrum have written online about how they deal with social situations. I started doing that long before I entered therapy on the theory that maybe I'm autistic, maybe not, but either way I should be able to learn something from people who are solving the same prob…

I'd argue that that kind of answers your own question, though. In my struggle to understand my issues, I've read plenty of books that offered some help or insight, but frustratingly seemed to somehow miss 'the point', however vague.

The moment I was diagnosed with Asperger's, and started searching for resources about that, I remember being astounded at how all the stories and descriptions were either exactly on point, or at least much more so than what I'd read before.

I've had the same experience with friendships. Most of my close friends, historically, suffered from various disorders, ranging from BPD, narcissism, ADD, chronic depression, bipolar disorder, etc. A big part of what made us 'click' was the different-ness, and yet there was always something lost in translation that wasn't so with most others I know with autism/asperger's.

Clearly, there's a lot we don't understand about ASD. And maybe we'll one day have various ways of labelling subtypes better. But in my experience and those of many people I know, there is something specific enough about ASD (even as a much vaguer label than Asperger's) to warrant a specific label.

I don't have as strong an opinion on this as I thought initially, because I do see that the label can be rather 'heavy', perhaps enough so that the benefits don't outweigh the cost. But at least right now, despite the pretty serious negative effects I've felt 'taking on' the label, I feel I'm better off with it. Maybe that's just something that some of us need to go through...

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