Why I love knowing I have high-functioning autism
telegraph.co.uk
telegraph.co.uk
ADHD is the classic example of this. Were I school age today I would almost certainly have been given the dual badges of ADHD and aspergers - my brother, who is seven years my junior, is labelled as both. Me, I'm just eccentric.
Why this bothers me is the outcome it can lead to. Having a "reason" for you being as you are leads to self-justification, to complacency at one's station in life. In his case he's medicated and in the eighth year of an undergraduate degree. I finished my masters in two years and founded a startup two years later as I am incapable of sitting still. I like being an undiagnosed creature, as I've ended up finding something that suits those traits in me, rather than suffering from them.
I know this is anecdotal, and this really isn't done diatribe against mental healthcare - plenty genuinely need it - but I worry that too many engage in that funnel out of some misdirected need to conform, and end up losing part of what and who they are.
Maybe having a reason can lead to complacency, but is a person like that going to be a huge success otherwise? With the right attitude, having a reason can lead to better understanding, greater drive, more success.
I don't think it's about having a label. It's about understanding what's going on so you can better accommodate it. Once you have a diagnosis, you automatically have access to a vast wealth of knowledge which can help you to cope.
Think of breaking your leg. Is getting it diagnosed as "broken leg" just a search for a label which will lead to complacency? Are you better off thinking your broken leg is an eccentricity which is some unique part of who you are? Of course not, you want to get it diagnosed as "broken leg" so you can bring all modern medical science to bear on it and get it fixed up so you can heal, and cope with it in the meantime.
Mental disorders are not the same as a broken leg, but they aren't so different, either. I think we'd be better off if we'd stop drawing this fairly arbitrary line between "physical" and "mental" problems.
To me it sounds like the social construct surrounding the truth is harmful. That those with a disability should be coddled lest they offend. That we should be understanding, accommodating, that we shouldn't expect much or worse, that we should medicate them into normalcy.
Bullshit.
It's when your behavior is rejected, when you meet with poor results, that you have a true incentive to improve and push yourself forward. It might be painful and difficult, but the end result can be greater than what you would have had if you were born "normal".
The only thing this environment of diagnosis, acceptance, and tolerance is creating is crippling fear for the parents and an environment that coddles the child's disability, instead of motivating the child to overcome it.
Ridiculous. "Just cheer up, you'll see that depression isn't so bad."
I worked hard at it. I wanted to fix it. I didn't take any medications. It was very, very hard. I wallowed in it for a long time. I fixed it.
"Oh you weren't actually depressed then, you don't know what you're talking about." I was (severely), and I do.
Is being very short a disorder? Being very tall? Having short legs with long arms?
Well yes... that's why we have glasses.
OCD is the Disorder where OC behaviors ruin your life and cause you distress.
OCPD is when you like your OC behaviors, but other people don't . It is a Personality Disorder, because your personality is socially "wrong".
What I do know, is that before the diagnosis, before all the different kinds of treatment and support, I didn't understand what I was missing. While I like the eccentric me, I am no longer forced to only be that. I have forged a relation to my daughter in a way I didn't think was possible. I don't only exist now, I live. Everything I am is coalescing, solidifying. I'm finally me, all of me. I live in a different world now, a world I can finally understand, because I know in which ways it looks different to me. Each year now feels like several did before, my life suddenly became much longer.
So while it's all nice that people discuss the finer points of whether diagnosis is a label or not, but if those arguments leads to somebody like me not getting diagnosed at all, the effect on their quality of life will be devastating.
I was 38,but for the most part I was little more than a teenager, my daughter needed a father. I can be that now.
But, obviously, no-one should get sent to the doctor because they don't fit into peoples preconceptions or society's most shallow norms. Most medications influencing the brain are crude and comes with very real risks, they should be handled with care.
Better yet, there's a vast body of research on techniques you can employ to make your life easier.
That sounds pretty compelling to me.
Surprise: everybody feels this way.
Validation that one's brain really is wired differently than most with specific strengths and weaknesses is useful information. Lets that person chart a more effective path forward accepting their weaknesses rather than believing a lack of effort or whatever. The ability to send a link to people in the majority category explaining it to them and from qualified people is even more valuable. Sometimes, when people around understand, they change their reactions and how they associate with that person to work with the strengths and around the weaknesses.
All in all, getting a diagnosis like this must have been a relief for her which validated the coping choices she made plus led she and her husband on a discovery process that will continue improving their lives. Most people don't need it. People whose brains are hardwired in ways that puts them at the mercy of tyrannical majority do.
However, in the author's case, its obviously helpful because it gives an explanation for why she's different after spending the majority of her life not knowing.
Often the best solution is both. If I struggle to pay attention, am I really going to benefit from more lessons on how to work with myself? This is especially apparent with ADHD, since stimulant meds are not a cure-all. You still need to learn to cope with periods of time when you're not medicated (pregnancy, in the morning, before going to bed, on "medication vacations", etc). I'm sure for some it could just become an excuse, but that's not taking into account the internal frustration built up from not easily being able to "keep up with society". People take the trash out before it gets too full to close the bag? Do laundry before running out of shirts? Empty the dishwasher when it finishes?
I learned about Aspergers in my early 20s and very quickly a lot of my problems made sense. I stopped worrying about the social difficulties and started focusing on building skills where the condition would not hinder me. This is actually why I initially looked into computer programming.
Consider that you are perhaps not justified in applying causation between your brother's diagnosis and medication to his outcome in life.
> Treatment options are often of doubtful effectiveness, and those that are shown to be effective are generally very blunt instruments.
I have to agree with this, but the alternative is often self medication. Before getting on ADHD medication, it was the norm for me to get a 2-liter of caffeinated soda merely to be able to focus on playing games or coding (for fun!) in the evening. Diagnoses have the potential to hurt as well as help, but IMO it's best that we can provide the tools for bettering yourself (also applicable to welfare spending, heh).
I have no interest in a "cure" any more than I'd try to cure the colors of my eyes.
Diagnosis can alleviate the push to conform. With greater awareness of colorblindness most designers worth anything avoid creating problem color combinations (e.g. red text on a black background). Many video games even have colorblind palate swaps for problematic area.
This seems to be happening with the Autism spectrum. As more people realize that there are people who are just wired in their own unique way we are starting to see more organizations and groups learning to embrace different ways of thinking rather than requiring conformity.
While I can appreciate the sentiments of folks that may find this sort of thing recognizable because of those who are self-diagnosing across the Internet (which is not a new trend BTW), I'm inclined to believe this isn't the appropriate forum for that.
I too thought this may have been something of less note or of the aforementioned tone until I got the opportunity to read the post in its entirety.
> The me that felt an overwhelming terror at the idea of travelling on the tube or getting into a lift. The me that didn’t claim child benefit for any one of my four children simply because the idea of filling in a form was too much.
> No one saw the me that would spend 14 hours straight, focused on a project, forgetting to dress. The me that felt an overwhelming terror at the idea of travelling on the tube or getting into a lift.
> I was told I have Ehlers Danlos Syndrome (EDS), a rare genetic connective tissue disorder, which affects pretty much every part of my body, causing gastroparesis – where the digestive system simply shuts down – knees that dislocate and autonomic issues, including difficulty in regulating temperature and heart rate.
Having sat in on meetings where parents, and their children, are given the opportunity to identify with a particular condition, I can tell you that this is a profound experience, not to be taken lightly.
Being able to have a direction to go towards in identifying IEPs that may lead their child towards a different and more successful path in their lives doesn't involved "mixed feelings." This isn't limited to education.
I have no doubt this is profoundly true for adults who have the capacity to discover and explore their own route toward their feelings of betterment and belonging in this world.
Having worked with countless children and adults who have / had Aspergers (no longer exists as of DSM-V) and other degrees of autism, stories like hers don't add up. There's a good chance that her psychologist did what many psychologists do today: misdiagnose. Her story does not include one piece of solid evidence that something is seriously abnormal.
That's not to say she does not have autism, but there would have to be a glaring issue with her social, behavioral, or mental functioning, which likely would've prevented her from living a relatively normal life for so many years.
Just because we fit criteria or because we have problems in our lives, it does not mean that we have to give our issues a name. If there's a particular problem, then seek help to alleviate it and stop boxing ourselves into these qualifications and descriptors that essentially mark as fixedly abnormal.
Except for a few nuances, this article could've been written about a woman friend of mine. She was diagnosed with Asperger's 2 years ago (by a west coast expert), at the age of 46, but she'd known her whole life she was different, without being able to adapt. She could go to regular school, but was made to read books by herself because she was ahead of the class and responded inappropriately when called. She had definite stimming behaviors when anxious or excited, on top of being physically clumsy and socially awkward. She was bullied in school, ostracized, even verbally abused by her parents ("can't you just behave normally like other kids?"). All of these left lasting trauma that could've been prevented by an earlier diagnosis, but there was no awareness of high-functioning autism when and where she grew up.
After smoking a lot of pot to cope in her teens, in her 20s she found work with animals and then computers, both of which she understands better than she understands humans. She took speech classes to be more confident and understand how others could talk in public. Over time, she was able to minimize her outwardly visible traits, such as the stimming. With financial success she was able to live independently and seemingly normally. But then a bad marriage sent her into a depression, and her psychologists gave her many diagnoses (including bi-polar) and prescribed many different drugs. None of them worked long term because the root of her depression was the Asperger's, not a traditional depression (for lack of a better term). Again, not being diagnosed with Asperger's led to many needless pharmaceuticals and suffering.
Once out of the bad marriage, she got better though she attributes it to the dozen or so supplements she takes (research on the Internet and self-medication). She met and married someone else that was good for her, and had a child. She herself now says that was a mistake, because she cannot cope with the constant attention and neediness--and she's lucky because her child has less Asperger's traits than she does. With aging and stress of family life, she says her Asperger's traits are coming back. She feels more anxious, she's claustrophobic again, she has trouble with people again, for example meeting with her child's teachers, and I've seen her have a regular tantrum when something went wrong.
Noise such as beeping machinery bothers her, and so do fluorescent lights because she can see the flicker in them. When she's having a bad day, all of her senses are heightened and over-sensitive to the point of pain (her description). She tried homeschooling, but she got in horrible fights with her child. That's when she finally got diagnosed (just when Asperger's was dropped from the DSM-V), and now she mentions her diagnosis to the people she interacts with regularly, to explain why for example she can't talk to a teacher in a classroom with fluorescent lights and lots of noise. So even though the diagnosis doesn't change anything and there is no medicine that can make her better, it has really helped her explain to herself and others how and why she is the way she is. It might also prevent misdiagnosis in the future.
Sorry for the long anecdote, but I really wanted to give you another example of high functioning autistic person that seems totally normal and issue-free from the outside (or at least used to be--she's losing friends now that she has more outbursts again). Yet knowing her story and her diagnosis, I can see how Asperger's has colored her life and often not in a beneficial way. And often it was the lack of diagnosis in those times 40 and 20 years ago that led to situations that hurt her (ostracized by her parents with resulting trauma, mistreated and mis-medicated for depression).
And just because the lady in the article doesn't talk about the negative side of her Asperger's, doesn't mean there isn't one. Like my friend, the negative aspects are private and sometimes traumatic. One more thing: the person pictured in that article looks strikingly similar to my friend: thin lips with an unnatural smile, bad hair, poor makeup and slightly off-style clothes (all poorly imitated social graces). I know it's totally unscientific, but I often notice that people with Asperger's (those I know diagnosed, and others I suspect undiagnosed) have trouble smiling artificially for a camera. My friend said she noticed her awkward smiles in pictures and learned how to consciously smile for the camera.
So especially as a professional in your field, I wish you wouldn't be so dismissive of Asperger's individuals, it doesn't help them in any way. Asperger's, or high functioning on the autism spectrum as we should say now, is a strange thing. It's a collection of many possible deviations from normal, and not every person diagnosed has all of them, yet there is a certain unmistakable blend of behaviors and reactions, sensory sensitivities, social inability, and mind-blindness (lack of theory of mind). Yet the high-functioning individual can mimic or even learn coping behavior that hides some of these (usually not all at once). It doesn't mean they enjoy doing so, or don't have the underlying issue anymore. In fact, my friend says she is physically exhausted at the end of a successful parent-teacher conference just from needing to think so much about how to behave and fit in--and stressing about it.