Last night I was the patient around which a Medical Emergency Team (MET) call was focused. I realised during the course of that MET call that I had a somewhat unique perspective to offer on the experience of being the patient in that situation. As well as being a qualified doctor, I am someone with an autism spectrum disorder.
I’ve had MET calls before I was diagnosed as being on the autism spectrum and they were just as difficult. Unfortunately almost all of them were more ‘painful’ than tonight’s episode as nurses, doctors and myself couldn’t understand some of my reactions. Knowing a bit more about myself, knowing about autism, and knowing how autism affects me offered a few saving graces tonight.
So let’s start with a running commentary of the MET and what it meant for me as the patient and how it played on my autistic features. Hopefully my open disclosure of this experience helps others on the autism spectrum by increasing the awareness of the impact something like a MET call can have on us.
In the early hours of the night my asthma suddenly started to worsen. I was already in hospital after being admitted with status asthmaticus the previous day. Things had been travelling along quite smoothly and in the morning leading up to this I had actually been moved from under the intensive care unit (ICU) bed-card to the general medical one and placed on a ward. Within minutes of my chest beginning to tighten up again I was right back at the point of being able to only physically speak in single words and displaying a persistent expiratory wheeze not just audible at the end of the bed, but all the way out at the nursing station.
Fortunately the medical intern happened to be at the relevant nursing station and that saved us some time. It was ok at first... The only people coming into the room were my nurse, who had introduced themselves at the start of their shift, and the intern; just that one unfamiliar person. I coped better with that single unfamiliar person being an intern as opposed to another nurse because I have walked her shoes and know well what her roles and limitations are. Perhaps if I did not have such a strong understanding of her likely capabilities, and actual responsibilities, she would have been a greater cause of anxiety. But I was not faced with that.
POINT 1: Someone with autism knowing a lot about the role, limitations, capabilities and responsibilities of an unfamiliar person is likely to feel more comfortable with that person than if they have little idea of what that person can, and is meant, to do.
The first few nebs of ventolin achieved very little and I actually worsened. The MET team were called...
Soon there were ICU nurses with a big trolley and loud beeping machines filling the gaps on the side of my bed. They were all lovely, greeting me with smiles, proficiency, reassurance and obvious confidence in their role. Once again my medically acquired knowledge of how a MET call works served to ease at least some elements of the anxiety I faced. As well as the ICU nurses all other nursing staff from my ward joined the room to assist. Soon I was met with another doctor, fairly senior looking, but no introduction or label to tell me exactly where he fitted into the scheme of things (so I was unable to place him in my current understanding of a MET team and who is doing what). Finally a familiar doctor appeared, the medical registrar who had accepted me the previous morning from the ICU team. His arrival clarified the unfamiliar doctor’s role for me and my anxiety level dropped just a touch.
POINT 2: Having an idea of how things work in a hospital can help people with autism cope in difficult situations.
POINT 3: Understanding who people are as they arrive to help can help reduce anxiety in a patient with an autism spectrum disorder. We like to know where everything fits in – it makes decoding all of those other social and communication things much easier.
Being a MET call, everyone wants information. Suddenly there were half a dozen voices all asking questions and seeking rapid-fire responses. Past medical history, history of the admission, history of just this episode, medications, effect of medications, patient obs from earlier in the shift etc... You get the picture. With different people asking these questions for different reasons I found that many of these questions were answered 5 or 6 times before everyone had the information that wanted. For me, sitting on the bed in the middle, it was pure chaos. There were voices inside and outside of my room. There were voices, questions, and instructions coming from people I could and could not see. While there was an obvious person to be taking the lead in this MET call, things were a little jumbled with different people taking the lead at different points in time. While it still worked I found I had no one ‘steady’ person to focus my attention on as the ‘go to’ person. The previous night when I was in the same state while in the emergency department (ED) a very strong, confident ED consultant had very clearly filled the role of leader and I could ignore some of the chaos and just try and focus on what she wanted me to do what and what information it was that she needed from me. Without that steady person my brain was forced to try and get my social filters working on full, while formulating answers (not pre-rehearsed like most things I say), and while attempting to ‘relax’... Sounds easy... Doesn’t it?
POINT 4 – Having one clear person for the patient to focus on as a key person to following instructions from and give information to can greatly assist a patient with an ASD in an emergency situation when lots of people need to be around to help. It gives a clear way of prioritising whose information the patient focuses their attention on and minimises the need for them to be doing the work of social filtering that doesn’t normally come naturally anyway.
POINT 5 – Information gathering is less stressful when more streamlined. If possible try to collect the information you need without constantly having questions repeated. This will minimise the sheer amount of verbal and ‘noise’ confusion around the patient with an autism spectrum disorder.
Being already admitted as a patient and aware my physical state was on a fairly rapid downhill run I was prepared for the next element of being the patient of a MET call. Touching, touching and more touching. Everyone was touching me. For so many of us on the autism spectrum soft touch is offensive and uncomfortable as opposed to firm, deep muscle, touch. Most medical professionals often trying to be reassuring lightly rub your arm or back etc. While prepared for this, it was a small taste of hell having 4 people supplying this kind of support simultaneously. Apart from the ‘extra’ reassuring touching there was still the clinical necessary touching. Stethoscopes from 3 doctors went on and off my chest, front and back. Nebulisers were filled, positioned, run and then removed, refilled and repositioned. ECG leads were stuck down on my wheezing chest. Monitoring equipment was attached to fingers and arms. The finally, cables were connected from all those bits to all the machines. Being highly sensitive to touch this was one of the most challenging, but unfortunately necessary, parts of the MET. I imagine this part isn’t fun for patients who aren’t on the autism spectrum either, but I would think it’s a fair bit worse for someone who notices every little tug on each area. Everyone did the right thing too in this MET, and they get a gold medal for it in my mind, every person touching me for a clinical reason or to attach some kind of therapeutic or monitoring equipment told me what they were doing first. Without that kind of fore-warning my instinct would have likely been to push them away (and I am strong when anxious). I’m sure this would have caused upset and difficulty in my interactions with the team as it has done in the past. As for the reassuring back and arm rubs, it is something where at least I have reasoned out in my mind that while it is uncomfortable for me I throw it through my social decoder and tell myself that the people doing it mean well and that is something they would want done for them if they were in the same situation. Short of educating every hospital employee about the potential for a sensory aversion to this kind of touch in people with autism spectrum disorders, I think this is something we spectrumites may simply have to accept as ‘one of those things’.
POINT 6 – People on the autism spectrum often have sensitivities to touch. Many prefer deep muscle touch to light touch.
POINT 7 – If you are a clinical person involved in treating someone with an autism spectrum disorder (and even other conditions such as dementia etc) telling people where you are going to touch, prod, and poke them before actually doing so will likely ease some of their anxiety surrounding your contact. It may also avoid situations of clinical personal being ‘pushed’ away by a patient who doesn’t understand the necessity behind your contact and simply sees it as aversive.
Along with all the extra people, unfamiliarity, confusing communication, unwanted touch and generally feeling unwell, there were the noises of all of the machines. On an individual basis each of them is fairly tolerable, but once you get a symphony of alarms with blood pressure cuffs inflating and nebulisers with oxygen running, you have a veritable mess of sound blaring in your ears that are already struggling to hear what everyone is asking and saying. Having quite the sensory aversion to beeping and mechanical sounds this was possibly the final straw that pushed me almost to complete shutdown during the MET. What was left to do? At least for this MET I had some understanding of autism and what it means for me.
POINT 8 – The sounds of the machines and monitors alone in a medical emergency situation can be stressful for someone with autism. Combined with all the other things involved in a medical emergency response, they can be the final straw.
Finally I caved. I grabbed my notepad and scrawled a desperate message to one of the many nurses telling me to try and relax as much as I could. I explained that I was on the autism spectrum and found it quite difficult to relax in overstimulating situations like a MET with lots of people, noises and chaos. The nurse was totally on the ball and instructed all extra, non-essential parties to leave. We were then left with only 2 people finishing off the monitoring etc while others gave me some much needed space. I was also able to give them some information from my communication folder which helped too. While it was awkward scrawling a message and explaining autism etc it was completely worth it. We were able to make an arrangement with the ICU registrar that any further METs needed that night could be avoided by the nurses paging him directly to come reassess me. In terms of communicating the different needs I have due to being on the autism spectrum it was no problem, I just wish I had outlined those challenges before requiring a MET.
So I hope that perhaps this perspective makes it easier for others with autism who may face a similar situation. Don’t be afraid to let staff know that you have different reactions to things. Consider telling them even when you are well enough to ‘compensate’ to an extent and the difficulties may not be obvious; then when you aren’t able to compensate you won’t need to stress as much about explaining yourself.
To medical staff reading this... Consider the possibility of sensory issues, aversion to chaos, difficulties with social filtering and communication and a general different style of processing when managing a patient on the autism spectrum: And don’t forget to be aware that you may not know a person is when you start treating them, but that doesn’t mean they may not be experiencing those difficulties.
Cheers until next time.
Aspergirl
Tuesday 14 December 2010
Saturday 9 October 2010
I survived and enjoyed my birthday party!
So it's all in the subject...
All of the planning that went into my birthday party made it fun and safe! I'm please to report back that while there were lots of people and many sensory inputs, I made it through without going into complete sensory overload and retreating.
From all reports I've heard everyone else had fun too (which is fantastic!)
I'd say the timetable/schedule was a Godsend! Every time I wasn't sure what to do or say I leaned on the schedule a little. Another positive about the schedule is there would have been enough activities to keep us going for another couple of hours. By the endof the party we were rushing to get everything eaten etc before driving down to the ice-rink.
Unfortunately at the ice skating rink one friend injured themselves in the first 5 minutes. =( Alas... The ice was pretty torn up and dodgy for most of the evening which was a bit disappointing...
I have to say a massive thank you to everyone who helped at the party, but the biggest thank you goes to one of my very NT friends who gave me a lot of feedback on my socialising at the party and how far I have come since being diagnosed as autistic and engaging in social skills development etc. It was great to hear from someone who knew me well before diagnosis how much of a difference there is now!
So here's to a wonderful party!
Of course, I was exhasuted afterwards, but it's hard to tell how much of that was from the party and how much was because I came down with swine flu immediately after!
All of the planning that went into my birthday party made it fun and safe! I'm please to report back that while there were lots of people and many sensory inputs, I made it through without going into complete sensory overload and retreating.
From all reports I've heard everyone else had fun too (which is fantastic!)
I'd say the timetable/schedule was a Godsend! Every time I wasn't sure what to do or say I leaned on the schedule a little. Another positive about the schedule is there would have been enough activities to keep us going for another couple of hours. By the endof the party we were rushing to get everything eaten etc before driving down to the ice-rink.
Unfortunately at the ice skating rink one friend injured themselves in the first 5 minutes. =( Alas... The ice was pretty torn up and dodgy for most of the evening which was a bit disappointing...
I have to say a massive thank you to everyone who helped at the party, but the biggest thank you goes to one of my very NT friends who gave me a lot of feedback on my socialising at the party and how far I have come since being diagnosed as autistic and engaging in social skills development etc. It was great to hear from someone who knew me well before diagnosis how much of a difference there is now!
So here's to a wonderful party!
Of course, I was exhasuted afterwards, but it's hard to tell how much of that was from the party and how much was because I came down with swine flu immediately after!
Wednesday 22 September 2010
Birthdays for the Autistic Person
So it's no secret I am on the Autism Spectrum; in actual fact, I'm quite happy being on the spectrum... But what happens when you're an aspie on the spectrum, have sensory issues but want to celebrate you birthday with a party?
Firstly, if you decide to have a party (as I am having for my 27th birthday this coming Saturday) I would recommend planning to feel exhausted for a good 24-48 hours afterwards. My housemate and I are already prepared for this. It's not all the games, preparation and cleaning up that will lead to this state of exhaustion for me, it's the large number of people and all the socialising and sensory stimuli that will be present. Fortunatley I like everyone who is coming to my party (which is a huge bonus).
Parties can be extremely anxiety provoking for someone on the spectrum. Some reasons follow:
- People! People everywhere!
- Unpredictability (this has to be the worst part)
- Making social conversation (I can guarantee you not all of my guests will want to chat about pharmacology/toxicology, Rubik's Cubes and forensics with me for 3 hours!)
- Gluten and dairy containing foods (yes, they accentuate my autistic behaviours, but oh! They taste so so good!)
- Reading people...
- Juggling activities like hosting and socialising.
How am I going to survive a birthday party I so desperately want?
1) It's a really well planned party. Guests were invited well in advance (a month) and this final week leading to the party I've been confirming with everyone whether they are definitely coming or not.
2) Most food has been purchased well in advance (non-perishables)
3) I will be using disposable bowls to serve lollies etc in! No washing up!
4) The party incorporates one of my special interests (I am having a giant Rubik's Cube cake!)
5) I invited people who know me well and who I don't have to pretend to be too normal around - so I can have fun being myself.
6) The party has a children's theme. Kid's parties are centred around activities (not socialising and having to make conversation) and having activities allows for structure (and gets everyone involved). So by making it a childrens' theme party I am able to fill the party time with activities and even have a schedule (very anxiety reducing to have a schedule). It also guarantees I don't have to be able to make conversation the whole time... I'll be able to engage through participation.
7) Most of the party is going to be outside the actual house. The inside of the house will serve as a retreat for anyone attending who is a little overwhelmed with the number of people and all of the sensory input. Obviously as the birthday girl my opportunities to retreat will be minimal (but I have plenty of spectrum dwelling friends attending who may appreciate this escape).
8) I am minimising my exposure to socialising and social contact as much as I can leading up to the party so that I have plenty of socialising energy in reserve.
9) Most things have been oragnised at least a week in advance (all the party bags were packed last weekend - and planned the weekend before that). The cake has been gradually prepared throughout the week leading up to the actual party. All the food is sitting on top of the plastic bowl it will be served in. The outdoor area has been cleaned and the drinks are in the fridge ready and waiting!
10) The final thing I have done to make this party enjoyable for myself (and hopefully others) is made it something I feel comfortable doing. It's hard for guests to be comfortable at a party if the birthday boy/girl isn't happy with the event.
So here's to a well planned and anticipated party. I'll update on how this autistic friendly party plan worked out next week...
Firstly, if you decide to have a party (as I am having for my 27th birthday this coming Saturday) I would recommend planning to feel exhausted for a good 24-48 hours afterwards. My housemate and I are already prepared for this. It's not all the games, preparation and cleaning up that will lead to this state of exhaustion for me, it's the large number of people and all the socialising and sensory stimuli that will be present. Fortunatley I like everyone who is coming to my party (which is a huge bonus).
Parties can be extremely anxiety provoking for someone on the spectrum. Some reasons follow:
- People! People everywhere!
- Unpredictability (this has to be the worst part)
- Making social conversation (I can guarantee you not all of my guests will want to chat about pharmacology/toxicology, Rubik's Cubes and forensics with me for 3 hours!)
- Gluten and dairy containing foods (yes, they accentuate my autistic behaviours, but oh! They taste so so good!)
- Reading people...
- Juggling activities like hosting and socialising.
How am I going to survive a birthday party I so desperately want?
1) It's a really well planned party. Guests were invited well in advance (a month) and this final week leading to the party I've been confirming with everyone whether they are definitely coming or not.
2) Most food has been purchased well in advance (non-perishables)
3) I will be using disposable bowls to serve lollies etc in! No washing up!
4) The party incorporates one of my special interests (I am having a giant Rubik's Cube cake!)
5) I invited people who know me well and who I don't have to pretend to be too normal around - so I can have fun being myself.
6) The party has a children's theme. Kid's parties are centred around activities (not socialising and having to make conversation) and having activities allows for structure (and gets everyone involved). So by making it a childrens' theme party I am able to fill the party time with activities and even have a schedule (very anxiety reducing to have a schedule). It also guarantees I don't have to be able to make conversation the whole time... I'll be able to engage through participation.
7) Most of the party is going to be outside the actual house. The inside of the house will serve as a retreat for anyone attending who is a little overwhelmed with the number of people and all of the sensory input. Obviously as the birthday girl my opportunities to retreat will be minimal (but I have plenty of spectrum dwelling friends attending who may appreciate this escape).
8) I am minimising my exposure to socialising and social contact as much as I can leading up to the party so that I have plenty of socialising energy in reserve.
9) Most things have been oragnised at least a week in advance (all the party bags were packed last weekend - and planned the weekend before that). The cake has been gradually prepared throughout the week leading up to the actual party. All the food is sitting on top of the plastic bowl it will be served in. The outdoor area has been cleaned and the drinks are in the fridge ready and waiting!
10) The final thing I have done to make this party enjoyable for myself (and hopefully others) is made it something I feel comfortable doing. It's hard for guests to be comfortable at a party if the birthday boy/girl isn't happy with the event.
So here's to a well planned and anticipated party. I'll update on how this autistic friendly party plan worked out next week...
Sunday 19 September 2010
Concerns regarding the DSM-V
I thought I should write about my concerns regarding the DSM-V revision.
I am not referring so much to the revision of the classification of Autism Spectrum Disorders, but rather that of personality disroders and how this may adversely affect undiagnosed people (particularly females) on the autism spectrum.
It is already apparent from many discussions that many of us women on the spectrum have been through misdiagnoses prior to receiving our correct spectrum diagnosis. Many of these errors have simply been through a lack of education of psychiatrists and medical professionals in recognising ASDs.
I was reading through the general diagnostic criteria for PDs for the DSM-V and held concerns that if a psychiatrist was unable to recognise where certain difficiculties came from for an ASD women that they would be most likely given a PD diagnosis (of some kind) and not an ASD diagnosis. I will explain further in a second. But I must say, I think the risk is substantial given that most psychiatrists brush over the ASD part of their leaning with the opinion "I don't need to know much about that because it's not a mental illness and other people deal with that". Quite contrare, I believe they should be highly aware of how ASDs can present because if they don't recognise it they risk mislabelling and treating those on the spectrum as mentally ill (or flawed in personality/character).
Here are the new DSM-V PD criteria (in general).
http://www.dsm5.org/ProposedRevisions/pages/proposedrevision.aspx?rid=478
Definition: Personality disorders represent the failure to develop a sense of self-identity and the capacity for interpersonal functioning that are adaptive in the context of the individual’s cultural norms and expectations.
[Now this is something where many people on the spectrum, especially women, would be identified... Many psychiatrists will focus more on the interpersonal functioning (difficult for most on the spectrum due to the different way we think and process things) because it is much harder for them to assess 'sense of self-identity'.]
A. Adaptive failure is manifested in one or both of the following areas:
1. Impaired sense of self-identity as evidenced by one or more of the following:
[I find it quite disturbing that I can find a way any ASD individual could be mistaken as having all three of these behaviours! Take note - psychiatrists look for mental illness FIRST, and mayonly recognise the very severe end of the spectrum associated with intellectual disability and severe language disorder]
i. Identity integration. Poorly integrated sense of self or identity (e.g., limited sense of personal unity and continuity; experiences shifting self-states; believes that the self presented to the world is a façade)
[Plenty of women on the spectrum report the 'self presented to the world is a facade', this isn't due to a PD in our case, but rather to the fact we have learnt to 'fake it' to an extent to avoid criticism and judgement of our little quirks, differences and difficulties: I have no doubts without a lot of 'faking it' when it comes to fitting in I never would have gotten through my own medical degree - and people still thought I was weird even with the work I put into 'pretending to be normal'.]
ii. Integrity of self-concept. Impoverished and poorly differentiated sense of self or identity (e.g., difficulty identifying and describing self attributes; sense of inner emptiness; poorly delineated interpersonal boundaries; definition of the self changes with social context)
[Actions of some women on the spectrum may be viewed as having 'poorly delineated interpersonal boundaries'; however with those on the spectrum it is more due to not being able to read or understand the social situation or the other person that leads to this rather than either disregard for the social norm, or believing they are above thesocial norm. Also, given the ability of females on the spectrum to mimick those around as a strategy to fit in with those around, it could easily be said women on the specturm meet the criteria 'definition of the self changes with social context': Because for the uninitiated psychiatrist who simply doesn't understand this is how we appear less weird, they just observe that we might be different depending on context and attribute it to a PD.]
iii. Self-directedness. Low self-directedness (e.g., unable to set and attain satisfying and rewarding personal goals; lacks direction, meaning, and purpose to life)
[It would be easy for people to see the difficulties some spectrumites have with executive functioning as having low- self-directedness; what seems like basic common sense and is easy for many NTs simply isn't for us... Of course without knowing our disability many people would point at certian things spectrumites do and say we have low self-directedness. Also the extra challenges we face in achieving our goals may throw us into the boat of being labelled 'unable to set and attain satisfying and rewarding personal goals'. I can think of many ladies on the spectrum who 'appear' to lack direction, not because they do, but because there are so many other things distracting them or making life difficult. Of course then we need to consider women who don't have a diagnosis and have become depressed not understanding why things are so hard for them - I can imagine a depressed Aspie may well appear to lack purpose to life if they simply get to the point where it's all too hard]
2. Failure to develop effective interpersonal functioning as manifested by one or more of the following:
[Well, for ASD individuals without training, skills, or the ability to fake it, I think nearly all of us at some point HAVE to exhibit this. Inherent in our disability is a difficulty with social integration and social interactions!!! And our subtle communication difficulties at the higher functioning end of the spectrum certainly set us up to look like we know what we're on about when we really aren't sure...]
i. Empathy. Impaired empathic and reflective capacity (e.g., finds it difficult to understand the mental states of others)
[Plenty of people on the spectrum find it difficult to understand the mental states of others - but that is due to our ASD not a PD]
ii. Intimacy. Impaired capacity for close relationships (e.g., unable to establish or maintain closeness and intimacy; inability to function as an effective attachment figure; inability to establish and maintain friendships)
[Many things I could say about this, but we have a different style of relationship. Wendy Lawson's book "Friendships: The Aspie Way" comes to mind. We may not engage in relationships the way the NT population expect, but that doesn't mean we have a PD. Due to our difficulties reading and understanding people we have an inherent difficulty establishing and maintaining friendships - more so with the NT population though... This point is frought with risks for the ASD individual. Basically if the psychaitrist doesn't recognise that it comes from a lack of understanding and subsequent anxiety, then they'll be ticking this box]
iii. Cooperativeness. Failure to develop the capacity for prosocial behavior (e.g., failure to develop the capacity for socially typical moral behavior; absence of altruism)
[some ASD social blunders can certainly come accross this way! But it's not because we know and choose to things that way - half the time we don't even know that something we did could be seen as unacceptable]
iv. Complexity and integration of representations of others. Poorly integrated representations of others (e.g., forms separate and poorly related images of significant others)
[The ASD concrete thinking style could certianly lend itself to this in many individuals]
B. Adaptive failure is associated with extreme levels of one or more personality traits.
[So if we have a meltdown under stress, or if our aspie traits are accentuated under stress we would display 'extreme levels of one or more personality traits' if others dont' recognise that it is part of being on the spectrum]
C. Adaptive failure is relatively stable across time and consistent across situations with an onset that can be traced back at least to adolescence.
[Well. What can I say. ASDs don't go away, but once we know what the problem is we have the opportunity to learn new skills... A lot of people start showing difficulties in adolescence because that is when the social stuff exceeds our autistic capabilities - social situations and expectations change around that age and we're usually still mastering the younger years. Girls in particular may not show up until adolescence because of our ability to mimick... So I think if someone hasn't been diagnosed and is presenting for some reason - eg. depression - then it would appear they have had longstanding difficulties and that it's probably comsistent]
D. Adaptive failure is not solely explained as a manifestation or consequence of another mental disorder
[Now this point is about the only saving grace in the whole lot... Unfortunately for those not already diagnosed it is of little benefit when most doctors fail to recognise ASDs in women and high functioning individuals! So are all of those undiagnosed people who accidentally see psychiatrists and medicos who are not aware of the Autism Spectrum doomed to misdiagnosis as PD patients - unfortunately I think the answer is quite possibly yes, and even more so before this revision to the DSM was made! We need to educate psychaitrists and doctors more about ASDs]
E. Adaptive failure is not solely due to the direct physiological effects of a substance (e.g., a drug of abuse, medication) or a general medical condition (e.g., severe head trauma)
[Yes. Well most of us won't be able to claim all out difficulties were due to substance use etc... This is basically so those who rock up to doctors all dopped up etc don't end up with a label for no reason - Also, my undiplomatic side personally thinks they probably need a label more than some other people so they get help and stop abusing their bodies...]
So there are my thoughts and concerns. I actually find it far more concerning than the revision of ASDs in the DSM for the sheer reason that as it is, doctors aren't learning more than 5 minutes on ASDs in medical school (or post-graduate psychiatry training. And if theydon't learn about it how can they recognise that the difficulties decribed above may actually be due to a developmental disorder and not due to a personality disorder. In contrast they learn much much more about personality disorders: Unfortunately some of that unoffficial teaching is "if the patient is hard to get along with then they probably have a personality disorder, so feel free to label them"... [ASD individuals can be difficult to get on with at times if you don't understand the spectrum or the fact they are on the spectrum!]
I would love to raise this with a committee, because I think the issue is huge (more so for the women who are already going undiagnosed than the men), but I'm not sure who you raise something this big with...
Thought about any of the above...?
I am not referring so much to the revision of the classification of Autism Spectrum Disorders, but rather that of personality disroders and how this may adversely affect undiagnosed people (particularly females) on the autism spectrum.
It is already apparent from many discussions that many of us women on the spectrum have been through misdiagnoses prior to receiving our correct spectrum diagnosis. Many of these errors have simply been through a lack of education of psychiatrists and medical professionals in recognising ASDs.
I was reading through the general diagnostic criteria for PDs for the DSM-V and held concerns that if a psychiatrist was unable to recognise where certain difficiculties came from for an ASD women that they would be most likely given a PD diagnosis (of some kind) and not an ASD diagnosis. I will explain further in a second. But I must say, I think the risk is substantial given that most psychiatrists brush over the ASD part of their leaning with the opinion "I don't need to know much about that because it's not a mental illness and other people deal with that". Quite contrare, I believe they should be highly aware of how ASDs can present because if they don't recognise it they risk mislabelling and treating those on the spectrum as mentally ill (or flawed in personality/character).
Here are the new DSM-V PD criteria (in general).
http://www.dsm5.org/ProposedRevisions/pages/proposedrevision.aspx?rid=478
Definition: Personality disorders represent the failure to develop a sense of self-identity and the capacity for interpersonal functioning that are adaptive in the context of the individual’s cultural norms and expectations.
[Now this is something where many people on the spectrum, especially women, would be identified... Many psychiatrists will focus more on the interpersonal functioning (difficult for most on the spectrum due to the different way we think and process things) because it is much harder for them to assess 'sense of self-identity'.]
A. Adaptive failure is manifested in one or both of the following areas:
1. Impaired sense of self-identity as evidenced by one or more of the following:
[I find it quite disturbing that I can find a way any ASD individual could be mistaken as having all three of these behaviours! Take note - psychiatrists look for mental illness FIRST, and mayonly recognise the very severe end of the spectrum associated with intellectual disability and severe language disorder]
i. Identity integration. Poorly integrated sense of self or identity (e.g., limited sense of personal unity and continuity; experiences shifting self-states; believes that the self presented to the world is a façade)
[Plenty of women on the spectrum report the 'self presented to the world is a facade', this isn't due to a PD in our case, but rather to the fact we have learnt to 'fake it' to an extent to avoid criticism and judgement of our little quirks, differences and difficulties: I have no doubts without a lot of 'faking it' when it comes to fitting in I never would have gotten through my own medical degree - and people still thought I was weird even with the work I put into 'pretending to be normal'.]
ii. Integrity of self-concept. Impoverished and poorly differentiated sense of self or identity (e.g., difficulty identifying and describing self attributes; sense of inner emptiness; poorly delineated interpersonal boundaries; definition of the self changes with social context)
[Actions of some women on the spectrum may be viewed as having 'poorly delineated interpersonal boundaries'; however with those on the spectrum it is more due to not being able to read or understand the social situation or the other person that leads to this rather than either disregard for the social norm, or believing they are above thesocial norm. Also, given the ability of females on the spectrum to mimick those around as a strategy to fit in with those around, it could easily be said women on the specturm meet the criteria 'definition of the self changes with social context': Because for the uninitiated psychiatrist who simply doesn't understand this is how we appear less weird, they just observe that we might be different depending on context and attribute it to a PD.]
iii. Self-directedness. Low self-directedness (e.g., unable to set and attain satisfying and rewarding personal goals; lacks direction, meaning, and purpose to life)
[It would be easy for people to see the difficulties some spectrumites have with executive functioning as having low- self-directedness; what seems like basic common sense and is easy for many NTs simply isn't for us... Of course without knowing our disability many people would point at certian things spectrumites do and say we have low self-directedness. Also the extra challenges we face in achieving our goals may throw us into the boat of being labelled 'unable to set and attain satisfying and rewarding personal goals'. I can think of many ladies on the spectrum who 'appear' to lack direction, not because they do, but because there are so many other things distracting them or making life difficult. Of course then we need to consider women who don't have a diagnosis and have become depressed not understanding why things are so hard for them - I can imagine a depressed Aspie may well appear to lack purpose to life if they simply get to the point where it's all too hard]
2. Failure to develop effective interpersonal functioning as manifested by one or more of the following:
[Well, for ASD individuals without training, skills, or the ability to fake it, I think nearly all of us at some point HAVE to exhibit this. Inherent in our disability is a difficulty with social integration and social interactions!!! And our subtle communication difficulties at the higher functioning end of the spectrum certainly set us up to look like we know what we're on about when we really aren't sure...]
i. Empathy. Impaired empathic and reflective capacity (e.g., finds it difficult to understand the mental states of others)
[Plenty of people on the spectrum find it difficult to understand the mental states of others - but that is due to our ASD not a PD]
ii. Intimacy. Impaired capacity for close relationships (e.g., unable to establish or maintain closeness and intimacy; inability to function as an effective attachment figure; inability to establish and maintain friendships)
[Many things I could say about this, but we have a different style of relationship. Wendy Lawson's book "Friendships: The Aspie Way" comes to mind. We may not engage in relationships the way the NT population expect, but that doesn't mean we have a PD. Due to our difficulties reading and understanding people we have an inherent difficulty establishing and maintaining friendships - more so with the NT population though... This point is frought with risks for the ASD individual. Basically if the psychaitrist doesn't recognise that it comes from a lack of understanding and subsequent anxiety, then they'll be ticking this box]
iii. Cooperativeness. Failure to develop the capacity for prosocial behavior (e.g., failure to develop the capacity for socially typical moral behavior; absence of altruism)
[some ASD social blunders can certainly come accross this way! But it's not because we know and choose to things that way - half the time we don't even know that something we did could be seen as unacceptable]
iv. Complexity and integration of representations of others. Poorly integrated representations of others (e.g., forms separate and poorly related images of significant others)
[The ASD concrete thinking style could certianly lend itself to this in many individuals]
B. Adaptive failure is associated with extreme levels of one or more personality traits.
[So if we have a meltdown under stress, or if our aspie traits are accentuated under stress we would display 'extreme levels of one or more personality traits' if others dont' recognise that it is part of being on the spectrum]
C. Adaptive failure is relatively stable across time and consistent across situations with an onset that can be traced back at least to adolescence.
[Well. What can I say. ASDs don't go away, but once we know what the problem is we have the opportunity to learn new skills... A lot of people start showing difficulties in adolescence because that is when the social stuff exceeds our autistic capabilities - social situations and expectations change around that age and we're usually still mastering the younger years. Girls in particular may not show up until adolescence because of our ability to mimick... So I think if someone hasn't been diagnosed and is presenting for some reason - eg. depression - then it would appear they have had longstanding difficulties and that it's probably comsistent]
D. Adaptive failure is not solely explained as a manifestation or consequence of another mental disorder
[Now this point is about the only saving grace in the whole lot... Unfortunately for those not already diagnosed it is of little benefit when most doctors fail to recognise ASDs in women and high functioning individuals! So are all of those undiagnosed people who accidentally see psychiatrists and medicos who are not aware of the Autism Spectrum doomed to misdiagnosis as PD patients - unfortunately I think the answer is quite possibly yes, and even more so before this revision to the DSM was made! We need to educate psychaitrists and doctors more about ASDs]
E. Adaptive failure is not solely due to the direct physiological effects of a substance (e.g., a drug of abuse, medication) or a general medical condition (e.g., severe head trauma)
[Yes. Well most of us won't be able to claim all out difficulties were due to substance use etc... This is basically so those who rock up to doctors all dopped up etc don't end up with a label for no reason - Also, my undiplomatic side personally thinks they probably need a label more than some other people so they get help and stop abusing their bodies...]
So there are my thoughts and concerns. I actually find it far more concerning than the revision of ASDs in the DSM for the sheer reason that as it is, doctors aren't learning more than 5 minutes on ASDs in medical school (or post-graduate psychiatry training. And if theydon't learn about it how can they recognise that the difficulties decribed above may actually be due to a developmental disorder and not due to a personality disorder. In contrast they learn much much more about personality disorders: Unfortunately some of that unoffficial teaching is "if the patient is hard to get along with then they probably have a personality disorder, so feel free to label them"... [ASD individuals can be difficult to get on with at times if you don't understand the spectrum or the fact they are on the spectrum!]
I would love to raise this with a committee, because I think the issue is huge (more so for the women who are already going undiagnosed than the men), but I'm not sure who you raise something this big with...
Thought about any of the above...?
Catching up...
I thought it might we worth writing about the progress I've made in the short time since being diagnosed as being on the Autism Spectrum.
Let's see.
- Now I can recorgnise different intensities of emotion
- I have strategies to help me deal with difficult social situations and therefore much more confidence
- I am more aware of myself, my own reactions and response, and also how I express emotions.
- I have learnt to see shades of grey like never before (and even silver linings)
- My communication skills are such that I can now be assertive without being offensive or inappropriate, and I can walk away from difficult communications feeling positive instead of thwarted.
- I have more friends than previously
- I have successfully left a toxic friendship that I had been stuck in (almost out of necessity) for several years.
- I am finally able to get along with my own mother. Who, just last week, agreed she most definitely has Asperger's Syndrome and wishes to learn some of the skills I have learnt this year.
- I am able to do things without a complete fear of failure, and am much more accepting of my own limitations.
- I have found oodles of uses for my Rubik's Cube obsession
- I have been able to use my experience to inspire others
- Best of all, I am happy.
I would say that's a world of progress.
Let's see.
- Now I can recorgnise different intensities of emotion
- I have strategies to help me deal with difficult social situations and therefore much more confidence
- I am more aware of myself, my own reactions and response, and also how I express emotions.
- I have learnt to see shades of grey like never before (and even silver linings)
- My communication skills are such that I can now be assertive without being offensive or inappropriate, and I can walk away from difficult communications feeling positive instead of thwarted.
- I have more friends than previously
- I have successfully left a toxic friendship that I had been stuck in (almost out of necessity) for several years.
- I am finally able to get along with my own mother. Who, just last week, agreed she most definitely has Asperger's Syndrome and wishes to learn some of the skills I have learnt this year.
- I am able to do things without a complete fear of failure, and am much more accepting of my own limitations.
- I have found oodles of uses for my Rubik's Cube obsession
- I have been able to use my experience to inspire others
- Best of all, I am happy.
I would say that's a world of progress.
Sunday 8 August 2010
Week 3...
In my last post I wrote about highschool and what it can be like when you move to a new one.
Based on my own personal experience in highschool I wasn't looking forward to week 3 of our theatre company's highschool program. My hypothesis was that by week 3 the kids would have decided I was weird and to be treated so. I won't lie, I expected to be the subject of various rude comments/jokes (mostly made just out of earshot so that no-one would get into trouble).
Our 3rd excursion to the local highschool working with our theatre company was a pleasant relief and enlightening. The kids were even better than week 2. We weren't the butt of cruel jokes and snide remarks. The students enthusiastically worked on their drama activities with us as though we belonged. There wasn't just a half-hearted respect being shown out of courtesy to the people visiting their school, but rather and obvious respect for each member of the theatre company present at the workshop. While the students were able to observe and identify ways in which each of us differed from the norm, we were not ridiculed, just accepted for who and what we are.
Of course, years of ridicule and school yard bullying makes a person cynical about supposedly positive experiences. I fit this category. Even with the students happily engaging and sharing with us I still held out on my acceptance of the positivity of the situation until right at the end when 4 students were interviewed about their experiences working with us. All four learnt a lot about the autism spectrum, clearly did not view people with a diagnosis as less capable or valuable ('different' was the word they most used), they all said it was a positive experience and that they were glad that they had the opportunity to meet with people who see the world from a different perspective. I was particularly heartened, when one of the boys did his interview, as I had been of the impression that he was not particularly keen on our introduction to his 'slack class'; he was just as positive as the girls.
Apart from discovering that "Week 3" didn't have to be the nightmare that it was for me when I really attended highschool, I had a big revelation. Being more than a decade older than the kids in the class, and not actually being part of their class, I was able to observe their interactions. I saw how friends in the class teased each other as a way of communicating and getting along. As an adult I could recognise that, but I thought back to when I was in school and realised that even at 16 years of age I hadn't yet developed the skill to tell when someone teasing was deliberately being mean or being socially friendly. I still haven't fully mastered this skill, but 10 years ago I couldn't tell at all. Seeing these interactions with a new level of social maturity made me realise that while there were definitely people in school who were mean to me and made life hell, that there were not nearly so many of these people as I thought: A lot of the times I felt like someone was being mean, I now realise they were probably trying to be friendly. Now I wonder what these people thought when I gave reponses to what I perceived to be insult. All I can think is that it would have been just as confusing for them when they got an unexpected reponse from me (and probably much easier in the end to not try and include me and to leave me alone).
It was nice to have a "Week 3" that didn't leave me traumatised and tearful.
Now I just need to work out how to tell what is friendly jest and what is not when I am interacting with peers my own age.
Based on my own personal experience in highschool I wasn't looking forward to week 3 of our theatre company's highschool program. My hypothesis was that by week 3 the kids would have decided I was weird and to be treated so. I won't lie, I expected to be the subject of various rude comments/jokes (mostly made just out of earshot so that no-one would get into trouble).
Our 3rd excursion to the local highschool working with our theatre company was a pleasant relief and enlightening. The kids were even better than week 2. We weren't the butt of cruel jokes and snide remarks. The students enthusiastically worked on their drama activities with us as though we belonged. There wasn't just a half-hearted respect being shown out of courtesy to the people visiting their school, but rather and obvious respect for each member of the theatre company present at the workshop. While the students were able to observe and identify ways in which each of us differed from the norm, we were not ridiculed, just accepted for who and what we are.
Of course, years of ridicule and school yard bullying makes a person cynical about supposedly positive experiences. I fit this category. Even with the students happily engaging and sharing with us I still held out on my acceptance of the positivity of the situation until right at the end when 4 students were interviewed about their experiences working with us. All four learnt a lot about the autism spectrum, clearly did not view people with a diagnosis as less capable or valuable ('different' was the word they most used), they all said it was a positive experience and that they were glad that they had the opportunity to meet with people who see the world from a different perspective. I was particularly heartened, when one of the boys did his interview, as I had been of the impression that he was not particularly keen on our introduction to his 'slack class'; he was just as positive as the girls.
Apart from discovering that "Week 3" didn't have to be the nightmare that it was for me when I really attended highschool, I had a big revelation. Being more than a decade older than the kids in the class, and not actually being part of their class, I was able to observe their interactions. I saw how friends in the class teased each other as a way of communicating and getting along. As an adult I could recognise that, but I thought back to when I was in school and realised that even at 16 years of age I hadn't yet developed the skill to tell when someone teasing was deliberately being mean or being socially friendly. I still haven't fully mastered this skill, but 10 years ago I couldn't tell at all. Seeing these interactions with a new level of social maturity made me realise that while there were definitely people in school who were mean to me and made life hell, that there were not nearly so many of these people as I thought: A lot of the times I felt like someone was being mean, I now realise they were probably trying to be friendly. Now I wonder what these people thought when I gave reponses to what I perceived to be insult. All I can think is that it would have been just as confusing for them when they got an unexpected reponse from me (and probably much easier in the end to not try and include me and to leave me alone).
It was nice to have a "Week 3" that didn't leave me traumatised and tearful.
Now I just need to work out how to tell what is friendly jest and what is not when I am interacting with peers my own age.
Wednesday 4 August 2010
Highschool Reunion
So the subject "Highschool Reunion" possibly isn't the most appropriate subject line for this particular entry. I considered "Back to Yesteryear", but was wary of any romantic connotations it may have.
I'm nearly 27 years old. Given that I haven't done a teaching degree, a local highschool isn't where you would expect to find me; yet, tomorrow morning, that is where I will be.
In April I joined a theatre company. The name of the complany is "Company @" (for Company Autistic Theatre). As far as we are aware, we are the only theatre company in the world where all performers have an autism spectrum disorder. Recently our ensemble performed for the general public for the first time. Our play "Framed Out" gave a comedic insiders view into the lived experience of people on the autism spectrum, using minimalistic theatre.
Since our performance, our manager and director were able to secure funds for us to develop a program for highschool students. In the program we work with students from local highschool in developing scenes that relate to autism in schools. For the purposes of this program 4 out of our ensemble of 12 actors were selected to work on the project. I am one of those 4.
Initially our project involved just the ensemble members and our director going over events from our own highschool experiences that we could dramatise for the sake of bringing some initial illustrations to the students. My own experience, involving a nasty prank with a valentines card, was one of the scenes we worked on. Working in our safe little group was comofortable.
You think by this age I wouldn't think twice about going into a highschool, but as the day approached for our first session with the students (grade 10) I became more and more nervous. I realised that despite being more than a decade older than the students that I was just as terrified of them, and how our interactions might pan out, as I was of people when I was in highschool. If anything I was more nervous, because in highschool I didn't have the insight of today knowing that I in fact am the on who is not normal; back in highschool, I simply thought I was superior to many (not all) of the people who tried to ridicule and torment me.
Our first session with the students was good. They were reasonably well behaved and participated with a safe level of enthusiasm. Having been to 10 schools during my pre-university career, this first session reminded me of the first day at a new school. On your first day at a new school people haven't gotten to know you very well, most will let differences slide for a short period of time (making the assumption that it may be due to new-kid-nerves). People are nice on the first day, people are welcoming.
Last week was like week 2 at a new school. Without actually doing anything in particular your differences have been noted. Whether people can pinpoint it or not, it is obvious that you don't interact or think the same way as the crowd. And so the crowd sticks closer together. When the crowd sticks closer together, they don't necessarily do anything to actively exclude you, but you get the feeling you don't belong (and perhaps you should find your own space, away from them, to socialise/play etc). Everyone is still civilised, and this is perhaps your only opportunity to avoid the social slum of the playground. If you can redeem yourself and minimise the expressions of your personal quicks and autistic idiosyncracies during the second week, perhaps the crowd will relax and count their initial opinions about your difference as being too quickly judged.
Tomorrow is week 3. Tomorrow the mini ensemble from Company @ will return to this particular local highschool. I don't think I magically redeemed myself from the plight into social isolation last week. I found myself just as confused by the interactions of the students as I was in highschool. How do they decide who is cool? How do they decide when something someone says is funny or not (there don't seem to be any consistencies). What makes them choose some students over others to work with. How do you get them to listen to your ideas too.
I don't think any of the students there would have had a clue of the degree to which I once again felt like I didn't belong. The truth is, now I don't belong... But my mind wondered if an extra decade of life would have brought me to a point where I could be one-up on the social interactions of a group of 15 year olds. Alas, it hasn't. I have no doubts that I have achieved more academically in the past decade than the majority of this particular class of students we are working with will achieve in the next 10 or so years of their life; but none of that changes the fact that in that decade I have failed to even master an adolescent understanding of certain social norms.
While it doesn't particular matter to me if this group of students accept or include me, the situation has caused considerable thought and reflection. When I was their age I thought a decade filled with abundant tertiary education such as what I have undertaken would obliterate the obvious social difference I display. I was wrong, and it was disheartening to discover this. I'm not sure I want to fit into the 'normal' social code, but I'd like to think if I did, I could. I remember being told when I was in highschool that once I was qualified etc that my peers would look up to and respect me - I was lead to believe the social side would hold far less weight (that was so misleadnig of the well meaning adults who instilled that message into my then adolescent mind).
So back to tomorrow. Tomorrow is week 3. Week 3 of every new school I was enrolled in went something like this. People had already worked out there was some level of difference. There were a few kind souls who looked kindly upon the social misfit and offered brief periods of supportive recognition (while appreciated, it was also understood on my part that these offerings of kindness were motivated out of pity for the one who couldn't manage to attain reasonable social status alone). Inclusion was on the basis that interactions with me would somehow benefit the group. Just as quickly as these brief periods of inclusion started, the longer periods of outside social observer would take over. In week 3 no-one would be explicitly mean, but things would be on the build to an attack of the vulnerable; this building did not have to be announced, and in all honesty, the waiting for whatever prank or ridicule was being planned for was worse than the actual insult itself. Week 3 was once of the hardest weeks, because after that the exclusion and nastiness would reach a level at which certain protectors could recognise and address it: In week 3 it all remained below the surface, rumbling and threatening like a volcano ready to errupt.
How do I feel about tomorrow. Nervous. A little bit stuck in memory lane (and desperately trying to pull my feet out of the mud before I get there tomorrow so that I don't go in there and drive the situation into negativity through my own fears). I had forgotten the anxiety of being in highschool until our return 3 weeks ago. Yes, I still have anxiety in adult social settings, but as an adult there is not the same expectation to join a clan and fit in with it (there is more scope for individuality).
So let's see if it's possible to get through week 3 with a bit more life experience behind me.
I'm nearly 27 years old. Given that I haven't done a teaching degree, a local highschool isn't where you would expect to find me; yet, tomorrow morning, that is where I will be.
In April I joined a theatre company. The name of the complany is "Company @" (for Company Autistic Theatre). As far as we are aware, we are the only theatre company in the world where all performers have an autism spectrum disorder. Recently our ensemble performed for the general public for the first time. Our play "Framed Out" gave a comedic insiders view into the lived experience of people on the autism spectrum, using minimalistic theatre.
Since our performance, our manager and director were able to secure funds for us to develop a program for highschool students. In the program we work with students from local highschool in developing scenes that relate to autism in schools. For the purposes of this program 4 out of our ensemble of 12 actors were selected to work on the project. I am one of those 4.
Initially our project involved just the ensemble members and our director going over events from our own highschool experiences that we could dramatise for the sake of bringing some initial illustrations to the students. My own experience, involving a nasty prank with a valentines card, was one of the scenes we worked on. Working in our safe little group was comofortable.
You think by this age I wouldn't think twice about going into a highschool, but as the day approached for our first session with the students (grade 10) I became more and more nervous. I realised that despite being more than a decade older than the students that I was just as terrified of them, and how our interactions might pan out, as I was of people when I was in highschool. If anything I was more nervous, because in highschool I didn't have the insight of today knowing that I in fact am the on who is not normal; back in highschool, I simply thought I was superior to many (not all) of the people who tried to ridicule and torment me.
Our first session with the students was good. They were reasonably well behaved and participated with a safe level of enthusiasm. Having been to 10 schools during my pre-university career, this first session reminded me of the first day at a new school. On your first day at a new school people haven't gotten to know you very well, most will let differences slide for a short period of time (making the assumption that it may be due to new-kid-nerves). People are nice on the first day, people are welcoming.
Last week was like week 2 at a new school. Without actually doing anything in particular your differences have been noted. Whether people can pinpoint it or not, it is obvious that you don't interact or think the same way as the crowd. And so the crowd sticks closer together. When the crowd sticks closer together, they don't necessarily do anything to actively exclude you, but you get the feeling you don't belong (and perhaps you should find your own space, away from them, to socialise/play etc). Everyone is still civilised, and this is perhaps your only opportunity to avoid the social slum of the playground. If you can redeem yourself and minimise the expressions of your personal quicks and autistic idiosyncracies during the second week, perhaps the crowd will relax and count their initial opinions about your difference as being too quickly judged.
Tomorrow is week 3. Tomorrow the mini ensemble from Company @ will return to this particular local highschool. I don't think I magically redeemed myself from the plight into social isolation last week. I found myself just as confused by the interactions of the students as I was in highschool. How do they decide who is cool? How do they decide when something someone says is funny or not (there don't seem to be any consistencies). What makes them choose some students over others to work with. How do you get them to listen to your ideas too.
I don't think any of the students there would have had a clue of the degree to which I once again felt like I didn't belong. The truth is, now I don't belong... But my mind wondered if an extra decade of life would have brought me to a point where I could be one-up on the social interactions of a group of 15 year olds. Alas, it hasn't. I have no doubts that I have achieved more academically in the past decade than the majority of this particular class of students we are working with will achieve in the next 10 or so years of their life; but none of that changes the fact that in that decade I have failed to even master an adolescent understanding of certain social norms.
While it doesn't particular matter to me if this group of students accept or include me, the situation has caused considerable thought and reflection. When I was their age I thought a decade filled with abundant tertiary education such as what I have undertaken would obliterate the obvious social difference I display. I was wrong, and it was disheartening to discover this. I'm not sure I want to fit into the 'normal' social code, but I'd like to think if I did, I could. I remember being told when I was in highschool that once I was qualified etc that my peers would look up to and respect me - I was lead to believe the social side would hold far less weight (that was so misleadnig of the well meaning adults who instilled that message into my then adolescent mind).
So back to tomorrow. Tomorrow is week 3. Week 3 of every new school I was enrolled in went something like this. People had already worked out there was some level of difference. There were a few kind souls who looked kindly upon the social misfit and offered brief periods of supportive recognition (while appreciated, it was also understood on my part that these offerings of kindness were motivated out of pity for the one who couldn't manage to attain reasonable social status alone). Inclusion was on the basis that interactions with me would somehow benefit the group. Just as quickly as these brief periods of inclusion started, the longer periods of outside social observer would take over. In week 3 no-one would be explicitly mean, but things would be on the build to an attack of the vulnerable; this building did not have to be announced, and in all honesty, the waiting for whatever prank or ridicule was being planned for was worse than the actual insult itself. Week 3 was once of the hardest weeks, because after that the exclusion and nastiness would reach a level at which certain protectors could recognise and address it: In week 3 it all remained below the surface, rumbling and threatening like a volcano ready to errupt.
How do I feel about tomorrow. Nervous. A little bit stuck in memory lane (and desperately trying to pull my feet out of the mud before I get there tomorrow so that I don't go in there and drive the situation into negativity through my own fears). I had forgotten the anxiety of being in highschool until our return 3 weeks ago. Yes, I still have anxiety in adult social settings, but as an adult there is not the same expectation to join a clan and fit in with it (there is more scope for individuality).
So let's see if it's possible to get through week 3 with a bit more life experience behind me.
Wednesday 28 July 2010
Starting Out
I'm 26 years old, and I've had a diagnosis of Asperger's Syndrome for just over a year now.
I'm a qualified doctor; a medical practitioner. I aspire to be brillient in pharmacology and toxicology. My obsession with the Rubik's cube has been a life-boat in understanding the world around me. Music runs through my veins and the 15 different instruments I can play. Numbers and chemical structures are my friends and colours are my emotions.
If someone had told me 10 years ago that I had an autism spectrum disorder I would have laughed hysterically. My understanding of autism and Asperger's syndrome didn't extend beyond the stereotypical Kanner Autism. My understanding now far summounts that of the majority of the general population: More concerning, is that my understanding of the autism spectrum appears to summount that of the majority of the medical profession, of which I am a part.
Don't be mistaken. I may not have had the diagnostic label highlighting my presence on the autism spectrum, but I definitely had the lived experience of Asperger's a decade ago.
The diagnosis of Asperger's Syndrome only landed in the DSM-IV in 1994. For a little perspective... In 1994 I was in the 5th grade. Parents, teachers and classmates all readily identified me as academically quite talented. Parents, teachers and classmates, also, all identified a degree of social ineptness above that of your average ten year old. Classmates highlighted their knowledge of my social difference with teasing and various degrees of torment. Teachers blissfully brushed away concerns that I might have some kind of impairment with their recognition that I was in fact brillient at engaging with adults (just not my youthful counterparts) and would therefore be just fine once the rest of the world caught up with me. My parents did not ignore my social ineptitude, but their explanation for it did not give me any guidance on how to grow out of or overcome this facet of my life: For them, they saw the small genius living under their roof and reasoned that what I most needed was to learn how to engage with people I found stupid.
Having been blessed with an IQ of 180, the perception that another person is stupid is one that I contend with more frequently than I would like.
Even now, there are people who find my diagnosis contentious. Such is the level of ignorance in the medical profession about what Asperger's syndrome is and how it presents in high-functioning, very able individuals, that I face ridicule from peers who simply do not understand how on some fronts I can be so successful, yet claim disability/disadvantage/difficulty with aspects of life that are incredibly simple and natural for them. How can it be that I can read a medical textbook in one sitting and perfectly explain it's contents, yet be almost unable to engage in the social arena at a peer appropriate level? Of course, those who know me, my personality, and my life in detail, know exactly why this is. Asperger's syndrome; my blessing and my curse.
It is a blessing to have a mind that can analyse, persist, memorise, absorb detail and think as logically as mine does. It is a blessing to be able to pick up a musical instrument and learn how to play it, at least at an amateur level, within hours or days. It is a blessing to be able to look at a diagram and have a perfect visual memory of that for a later date. It is a blessing to be able to replay events in crystal clear internal video at will.
It is a curse to be so intelligent that one's difficulties are not recognised as a disability, but rather labelled a flaw of character. It is a curse to be able to get into the depths of conversation with someone about a topic of special interest, only to later trip on a social aspect of the interaction and detract from their perception of your ableness. It is a curse to remember everything that happens in your conscious moments with every painful detail. It is a curse to be so close to normal that people judge you for not quite being there.
Given the option, would I choose not to be on the autism spectrum? No! A million times, no!
I value each part of this difference and what it brings to my life and others... I value me; who I am, and what I will achieve. I am not alone in these things that I value; but the crowd of those who join me is too small.
I fear that the reason those who truely value the difference found in the autism spectrum are not so few because it is not to be valued, but because society is not enough aware of autism, what it is, what those with it have to offer, and where it has brought the world so far.
I am just one person on the autism spectrum, I will give just one perspective. Follow this blog and enjoy reading about the positive and negative impact that autism has had on just one. I intend to be brutally honest with my posts.
What is it like to have Asperger's syndrome? What do I aspire to achieve? Watch me achieve. Hear when I fail. Share when I have joy and when I have pain.
I'm a qualified doctor; a medical practitioner. I aspire to be brillient in pharmacology and toxicology. My obsession with the Rubik's cube has been a life-boat in understanding the world around me. Music runs through my veins and the 15 different instruments I can play. Numbers and chemical structures are my friends and colours are my emotions.
If someone had told me 10 years ago that I had an autism spectrum disorder I would have laughed hysterically. My understanding of autism and Asperger's syndrome didn't extend beyond the stereotypical Kanner Autism. My understanding now far summounts that of the majority of the general population: More concerning, is that my understanding of the autism spectrum appears to summount that of the majority of the medical profession, of which I am a part.
Don't be mistaken. I may not have had the diagnostic label highlighting my presence on the autism spectrum, but I definitely had the lived experience of Asperger's a decade ago.
The diagnosis of Asperger's Syndrome only landed in the DSM-IV in 1994. For a little perspective... In 1994 I was in the 5th grade. Parents, teachers and classmates all readily identified me as academically quite talented. Parents, teachers and classmates, also, all identified a degree of social ineptness above that of your average ten year old. Classmates highlighted their knowledge of my social difference with teasing and various degrees of torment. Teachers blissfully brushed away concerns that I might have some kind of impairment with their recognition that I was in fact brillient at engaging with adults (just not my youthful counterparts) and would therefore be just fine once the rest of the world caught up with me. My parents did not ignore my social ineptitude, but their explanation for it did not give me any guidance on how to grow out of or overcome this facet of my life: For them, they saw the small genius living under their roof and reasoned that what I most needed was to learn how to engage with people I found stupid.
Having been blessed with an IQ of 180, the perception that another person is stupid is one that I contend with more frequently than I would like.
Even now, there are people who find my diagnosis contentious. Such is the level of ignorance in the medical profession about what Asperger's syndrome is and how it presents in high-functioning, very able individuals, that I face ridicule from peers who simply do not understand how on some fronts I can be so successful, yet claim disability/disadvantage/difficulty with aspects of life that are incredibly simple and natural for them. How can it be that I can read a medical textbook in one sitting and perfectly explain it's contents, yet be almost unable to engage in the social arena at a peer appropriate level? Of course, those who know me, my personality, and my life in detail, know exactly why this is. Asperger's syndrome; my blessing and my curse.
It is a blessing to have a mind that can analyse, persist, memorise, absorb detail and think as logically as mine does. It is a blessing to be able to pick up a musical instrument and learn how to play it, at least at an amateur level, within hours or days. It is a blessing to be able to look at a diagram and have a perfect visual memory of that for a later date. It is a blessing to be able to replay events in crystal clear internal video at will.
It is a curse to be so intelligent that one's difficulties are not recognised as a disability, but rather labelled a flaw of character. It is a curse to be able to get into the depths of conversation with someone about a topic of special interest, only to later trip on a social aspect of the interaction and detract from their perception of your ableness. It is a curse to remember everything that happens in your conscious moments with every painful detail. It is a curse to be so close to normal that people judge you for not quite being there.
Given the option, would I choose not to be on the autism spectrum? No! A million times, no!
I value each part of this difference and what it brings to my life and others... I value me; who I am, and what I will achieve. I am not alone in these things that I value; but the crowd of those who join me is too small.
I fear that the reason those who truely value the difference found in the autism spectrum are not so few because it is not to be valued, but because society is not enough aware of autism, what it is, what those with it have to offer, and where it has brought the world so far.
I am just one person on the autism spectrum, I will give just one perspective. Follow this blog and enjoy reading about the positive and negative impact that autism has had on just one. I intend to be brutally honest with my posts.
What is it like to have Asperger's syndrome? What do I aspire to achieve? Watch me achieve. Hear when I fail. Share when I have joy and when I have pain.
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