Need help/information
14 May 2009, 6:54 am
Hope this is the right place to post.
Social worker believes I am not on the autistic spectrum because I function well socially (in his opinion, from the three occasions we have met in a formal, sensory safe environment.. he knows I have to rest for days after one visit yet this doesn't seem to him an abnormality related to autism) and have a sense of humour.
I believe that I am on the spectrum (massive sensory problems, synaesthesia, obsessive traits, organisation problems coming out of my ears etc. I was very socially innapropriate as a child but my verbal skills seem to have masked it, plus the fact that I don't have any friends) and as far as I was concerned that was my diagnosis, but this chap won't accept it (seems to have only dealt with aspergers and is comparing me to his narrow past experiences?).
I was lead to believe that females in particular with AS can often function very well socially/verbally (correct me if this is wrong!) so I am looking for any info, links, etc. that would show this or that I can present to him before he sends what I consider to be a misleading report.
Thanks!
14 May 2009, 7:02 am
hey, sorry i can't be more helpful.. if nothing else this person is a social worker & so not even remotely qualified to assess whether or not you have autism etc.. there are many knowledgeable ladies here & i'm sure they could give a better insight.
i kinda dislike social workers too so i'm probably biased 
14 May 2009, 7:22 am
Thank you for posting Fudo, I'm feeling quite upset to be honest.
He hasn't listened to me on any area. He's put "She has also been diagnosed with a 'non specific complex autistic spectrum disorder'. For this assessor this diagnosis has always seemed problematic."
I don't recall it being problematic though, the issue was that I didn't clearly fit in the aspergers camp, but am instead on the general spectrum. I don’t understand why he’s giving his opinion on the diagnosis when he's only a social worker, and he’s basing it solely on his previous experiences when his experiences seem to be solely of males with aspergers. It might sound adolescent but this sort of thing doesn’t half make me feel alone.
14 May 2009, 7:26 am
MarchViolets wrote:
Social worker believes I am not on the autistic spectrum because I function well socially (in his opinion, from the three occasions we have met in a formal, sensory safe environment.. he knows I have to rest for days after one visit yet this doesn't seem to him an abnormality related to autism) and have a sense of humour.
The grounds this person is citing are spurious.
Quote:
I believe that I am on the spectrum (massive sensory problems, synaesthesia, obsessive traits, organisation problems coming out of my ears etc. I was very socially innapropriate as a child but my verbal skills seem to have masked it, plus the fact that I don't have any friends) and as far as I was concerned that was my diagnosis, but this chap won't accept it (seems to have only dealt with aspergers and is comparing me to his narrow past experiences?).
Probably, but not necessarily. People who cannot claim any known interaction with someone with AS have sought to impose their view that I do not have AS on me. It seems amateur assessment and refutation of ASDs is a rather trendy hobby among health and social-work professionals. So much for keeping within the scope of their professional competency when practicing.
Why not ask this person directly what the basis is for their belief that they can "detect" AS without the benefit of clinical assessment? Otherwise it's literally anyone's guess where they imagine they got their alleged knowledge from.
Quote:
I was lead to believe that females in particular with AS can often function very well socially/verbally (correct me if this is wrong!) so I am looking for any info, links, etc. that would show this or that I can present to him before he sends what I consider to be a misleading report.
Thanks!
Thanks!
You could probably find what you are looking for in the published work of Dr Tony Attwood. Google his name and you can find his web site which has some resources. Your local library may have some books by him which could provide what you are looking for.
14 May 2009, 7:34 am
Quote:
Probably, but not necessarily. People who cannot claim any known interaction with someone with AS have sought to impose their view that I do not have AS on me. It seems amateur assessment and refutation of ASDs is a rather trendy hobby among health and social-work professionals. So much for keeping within the scope of their professional competency when practicing.
Why not ask this person directly what the basis is for their belief that they can "detect" AS without the benefit of clinical assessment? Otherwise it's literally anyone's guess where they imagine they got their alleged knowledge from.
Why not ask this person directly what the basis is for their belief that they can "detect" AS without the benefit of clinical assessment? Otherwise it's literally anyone's guess where they imagine they got their alleged knowledge from.
I know for a fact he's basing it on his past experiences (of males with aspergers, I believe from what he has told me). He put "She has a very developed social approach to conversation which is not found, in my experience, with an autistic spectrum disorder. It is my view that any deficits in communication are due to her difficulties with processing information rather than with a disorder recognised as being on the autistic spectrum" Yet goes on to say that I need help with understanding what to say using a phone, for example, or that I require "recovery time" from social interaction.
Quote:
You could probably find what you are looking for in the published work of Dr Tony Attwood. Google his name and you can find his web site which has some resources. Your local library may have some books by him which could provide what you are looking for.
Thank you very much for the info. I will Google him, unfortunately I cannot travel so I cannot search for information using a library, and if the information is in books I won't be able to order and read them in time to send this report back to him.
14 May 2009, 7:34 am
MarchViolets wrote:
I'm feeling quite upset to be honest.
I expect so.
I am offended personally, and I was not even there.
I am a human individual, not some kind of "essence of ASD clone". We do not come with flashing neon signs suspended above our heads, and should not have to conform to some trumped up social-worker's prejudices about us in order to be treated with respect and dignity instead of doubt and dismissal.
14 May 2009, 7:36 am
People like your social worker make me angry. Fudo is right, they are not qualified to make a diagnosis at all.
Hope these links are helpful:
Link: Asperger Syndrome and Girls
Quote:
Aspie girls typically use their average to above-average intelligence to hide their social difficulties. Pretending To Be Normal is the title of an autobiography by Liane Holliday-Willey, a famous Aspie. It could be the title of most Aspie girls' life stories. Since they do not understand how to process and express emotions in a normal way, their faces often develop a "mask-like" quality. Typically, they put a permanent smile on their faces and constantly try to please others. Some social scientists believe that girls are better at developing such ways of camouflaging their disorder because they are socialized to be passive.
Girls with Asperger's learn to mimic what other children do. However, without role models, they cannot figure out what to do on their own. They often memorize scripts when they have to interact with others. For example, one girl keeps chanting, "No thank you, I'm just looking," every time she has to enter a store.
Girls with Asperger's learn to mimic what other children do. However, without role models, they cannot figure out what to do on their own. They often memorize scripts when they have to interact with others. For example, one girl keeps chanting, "No thank you, I'm just looking," every time she has to enter a store.
Link: Girls with Asperger's Syndrome
Quote:
Although there are 4 boys for every girl diagnosed with Asperger’s Syndrome (AS), high-functioning girls with autistic spectrum disorders may not be as easy to recognize due to a number of differences in their social interactions and behavior. This results from the fact that girls are more inclined to adopt effective strategies to hide their differences in social situations.
Invisibility Strategies
Girls with AS are adept at disappearing within a large group, staying safely at the periphery without really interacting socially. When they do participate, they may be at risk for bullying by other girls. While male bullies are more likely to engage in physical aggression, female bullies tend to use relational aggression strategies, such as making comments designed to tarnish the reputations of others. Because they are less inclined to be “bitchy” or “fickle” in their interactions and so have no defense against relational aggression, girls with AS are often befriended by at least one kind, socially skilled girl who feels compassion for her naive companion. The establishment of one or more such friendships can make it appear as though the girl with AS has a “normal” social life. However, it is the other girl or girls who generally make the friendship overtures, and some girls with AS prefer to spend time with boys, as they are often more straightforward and thus send fewer confusing social signals.
Camouflaging Strategies
Girls with AS may appear to use ordinary gestures and facial expressions during a conversation and to reciprocate appropriately. However, in many cases they are basing these gestures, facial expressions and responses on someone they have observed who is socially adept. Additionally, they use their intellect rather than natural social intuition to choose the correct responses.
Due to the need to copy a more socially skilled individual in given situations, girls with AS will often wait quietly on the sidelines in new social situations until they learn the rules of the game, after which they are able to imitate the correct responses that other children have made. However, if the nature of the game changes the strategy fails, and the social deficits become apparent.
Seemingly Normal Interests
Autistic spectrum disorders are characterized by narrow, obsessive interests. Although boys who are obsessed with trains or bus schedules tend to stand out, there are few who question a young girl’s obsession with dolls, horses, or even building toys such as LEGO. However, a girl with AS who likes dolls will usually prefer to play with them alone rather than with other children. She will probably have a much larger collection than other girls, and she will spend time arranging them in various configurations (such as alphabetical order). She will have more interest in organizing and categorizing than creating social storylines for them.
Invisibility Strategies
Girls with AS are adept at disappearing within a large group, staying safely at the periphery without really interacting socially. When they do participate, they may be at risk for bullying by other girls. While male bullies are more likely to engage in physical aggression, female bullies tend to use relational aggression strategies, such as making comments designed to tarnish the reputations of others. Because they are less inclined to be “bitchy” or “fickle” in their interactions and so have no defense against relational aggression, girls with AS are often befriended by at least one kind, socially skilled girl who feels compassion for her naive companion. The establishment of one or more such friendships can make it appear as though the girl with AS has a “normal” social life. However, it is the other girl or girls who generally make the friendship overtures, and some girls with AS prefer to spend time with boys, as they are often more straightforward and thus send fewer confusing social signals.
Camouflaging Strategies
Girls with AS may appear to use ordinary gestures and facial expressions during a conversation and to reciprocate appropriately. However, in many cases they are basing these gestures, facial expressions and responses on someone they have observed who is socially adept. Additionally, they use their intellect rather than natural social intuition to choose the correct responses.
Due to the need to copy a more socially skilled individual in given situations, girls with AS will often wait quietly on the sidelines in new social situations until they learn the rules of the game, after which they are able to imitate the correct responses that other children have made. However, if the nature of the game changes the strategy fails, and the social deficits become apparent.
Seemingly Normal Interests
Autistic spectrum disorders are characterized by narrow, obsessive interests. Although boys who are obsessed with trains or bus schedules tend to stand out, there are few who question a young girl’s obsession with dolls, horses, or even building toys such as LEGO. However, a girl with AS who likes dolls will usually prefer to play with them alone rather than with other children. She will probably have a much larger collection than other girls, and she will spend time arranging them in various configurations (such as alphabetical order). She will have more interest in organizing and categorizing than creating social storylines for them.
Link: BBC - Girls' autism 'under-diagnosed'
Quote:
Girls with autism may not be identified because they do not show traditional signs of the disorder, an expert warns.
Children with autistic spectrum disorders have poor social and communication skills.
Hyperactivity, and interests in technical hobbies have been seen as characteristics of the disorder.
But Christopher Gillberg, of the National Centre of Autism Studies, said girls were often passive and collected information on people, not things.
Girls are more passive and not as active or aggressive as boys with autism are
Professor Christopher Gillberg
Around 535,000 people in the UK are estimated to have autistic spectrum disorders.
The number of boys diagnosed is much greater than the number of girls, but Professor Gillberg said the difference in incidence may not be as great as currently thought.
Children with autistic spectrum disorders have poor social and communication skills.
Hyperactivity, and interests in technical hobbies have been seen as characteristics of the disorder.
But Christopher Gillberg, of the National Centre of Autism Studies, said girls were often passive and collected information on people, not things.
Girls are more passive and not as active or aggressive as boys with autism are
Professor Christopher Gillberg
Around 535,000 people in the UK are estimated to have autistic spectrum disorders.
The number of boys diagnosed is much greater than the number of girls, but Professor Gillberg said the difference in incidence may not be as great as currently thought.
_________________
DX: HFA and ADHD
14 May 2009, 7:44 am
MarchViolets wrote:
Thank you for posting Fudo, I'm feeling quite upset to be honest.
He hasn't listened to me on any area. He's put "She has also been diagnosed with a 'non specific complex autistic spectrum disorder'. For this assessor this diagnosis has always seemed problematic."
I don't recall it being problematic though, the issue was that I didn't clearly fit in the aspergers camp, but am instead on the general spectrum. I don’t understand why he’s giving his opinion on the diagnosis when he's only a social worker, and he’s basing it solely on his previous experiences when his experiences seem to be solely of males with aspergers. It might sound adolescent but this sort of thing doesn’t half make me feel alone.
He hasn't listened to me on any area. He's put "She has also been diagnosed with a 'non specific complex autistic spectrum disorder'. For this assessor this diagnosis has always seemed problematic."
I don't recall it being problematic though, the issue was that I didn't clearly fit in the aspergers camp, but am instead on the general spectrum. I don’t understand why he’s giving his opinion on the diagnosis when he's only a social worker, and he’s basing it solely on his previous experiences when his experiences seem to be solely of males with aspergers. It might sound adolescent but this sort of thing doesn’t half make me feel alone.
no problem. sorry you're feeling upset. i am undiagnosed AS, i think i have it, "they" are sceptical, but seemingly in an irrational way. Frankly if you think you have it i'd say F**k them!! figuratively speaking.
especially coming from a social worker, i get it from "lesser" doctors which worries me. ahh i dunno i'm very angry with the system in general.
i wish you luck & happiness either way
PS on a side note because i don't have an AS dx, the non-verbal comms problems are seen as a personality trait & subsequently means i'm not suitable for any treatment as i'm diagnosed with some, as yet unexplained "behavioural disorder"
i think people are afraid of the Autistic spectrum.
14 May 2009, 7:53 am
MarchViolets wrote:
He put "She has a very developed social approach to conversation which is not found, in my experience, with an autistic spectrum disorder.
This sounds like subjective mumbo-jumbo to me. If you are displaying particular social competencies that this person thinks are inconsistent with a diagnosis given by a professional who holds themselves out as being clinically competent to diagnose such conditions, then this person needs to name those competencies specifically in my view. This is a social worker claiming to know better than a diagnostician and I would expect a very high level of detailed explanation to accompany such.
Quote:
It is my view that any deficits in communication are due to her difficulties with processing information rather than with a disorder recognised as being on the autistic spectrum"
Mind boggling. Perhaps you could inquire as to precisely what (if not difficulties with processing information) causes deficits in communication that occur in disorders on the Autism spectrum. Last time I had such trouble (which for the record was a few hours ago), the problem was one best described as difficulty processing information.
Quote:
Thank you very much for the info. I will Google him, unfortunately I cannot travel so I cannot search for information using a library, and if the information is in books I won't be able to order and read them in time to send this report back to him.
I am not particularly mobile myself.
Who exactly is this report going to, and what is this social worker's "brief" in all this (ie what is their job when he is not taking it on himself to over-rule physicians presumably much better qualified to make this call than he is)?
14 May 2009, 8:11 am
Thank you to everyone who has responded so far, I shall reply properly later. The information regarding females on the autistic-spectrum is particularly useful.
Quote:
Who exactly is this report going to, and what is this social worker's "brief" in all this (ie what is their job when he is not taking it on himself to over-rule physicians presumably much better qualified to make this call than he is)?
I'm going to move out with assistance (which they are calling "rehab" - I find that in itself disturbing as there are certain aspects of my life where I will always require "care" and not "rehabilitation", such as navigating (indoor and outdoor) routes and travelling outside, I cannot even cross a road by myself). This man is trying to outline my needs and what care I will require when I move out, based on previous reports and such. It is very important that he gets it right.
Regarding my mobility issues he's put that I will begin learning the route home. I can't even begin to express how wrong that is. It makes me wish that I had a diagnosis for that particular problem, but I don't even know what it would be called or who to approach.
14 May 2009, 8:20 am
Information processing and consulting, including publishing books, has been my lifelong career.
I don't get why trained professionals do NOT GET when information is incomplete. AS understanding is changing daily - which means that the information that exists today may be WRONG or INCORRECTLY INTERPRETED.
Do they not get that people BELIEVED the world was flat at one time? And that in modern times, doctors believed nonsense too. Prozac, used by 40,000,000 people - is now suspected to have been no better than a placebo! http://www.guardian.co.uk/society/2008/ ... alresearch
I think doctors should focus on helping a person test themselves and find out what they have. Instead of "observe and judge", they should get out a list of symptoms of all possible disorders and review with the patient. Make a comparison chart and grade it together. This might take many hours (6 to 8 hours?). Then re-do it every 6 months or so.
14 May 2009, 8:23 am
MarchViolets wrote:
Thank you to everyone who has responded so far, I shall reply properly later. The information regarding females on the autistic-spectrum is particularly useful.
I'm going to move out with assistance (which they are calling "rehab" - I find that in itself disturbing as there are certain aspects of my life where I will always require "care" and not "rehabilitation", such as navigating (indoor and outdoor) routes and travelling outside, I cannot even cross a road by myself). This man is trying to outline my needs and what care I will require when I move out, based on previous reports and such. It is very important that he gets it right.
Regarding my mobility issues he's put that I will begin learning the route home. I can't even begin to express how wrong that is. It makes me wish that I had a diagnosis for that particular problem, but I don't even know what it would be called or who to approach.
Quote:
Who exactly is this report going to, and what is this social worker's "brief" in all this (ie what is their job when he is not taking it on himself to over-rule physicians presumably much better qualified to make this call than he is)?
I'm going to move out with assistance (which they are calling "rehab" - I find that in itself disturbing as there are certain aspects of my life where I will always require "care" and not "rehabilitation", such as navigating (indoor and outdoor) routes and travelling outside, I cannot even cross a road by myself). This man is trying to outline my needs and what care I will require when I move out, based on previous reports and such. It is very important that he gets it right.
Regarding my mobility issues he's put that I will begin learning the route home. I can't even begin to express how wrong that is. It makes me wish that I had a diagnosis for that particular problem, but I don't even know what it would be called or who to approach.
hey erm just a quick thought, have you applied for DLA? (Disability living allowance) i've recently re-applied & trouble with mobility is covered quite well. i'm thinking if you applied for DLA without this silly social worker, but someone you can trust, you can not only list &identify areas you have difficulty in &/or things that are "disabling" to you, with the help of some questions, but also secure a little money to help with "care" &"mobility" according to the DLA folks..
anyways just a thought, but if you take almost everything literally like me, i think it will help.
14 May 2009, 8:43 am
MarchViolets wrote:
This man is trying to outline my needs and what care I will require when I move out, based on previous reports and such. It is very important that he gets it right.
Yes it is very important (to you, although less so to him I expect) and utterly independent of any need for this person to interpret your diagnostic status.
It is his job to identify barriers to achieving the goal of moving out (in a way that is sustainable), and come up with solutions for them. None of this entails or appropriately includes making alternative diagnostic suggestions or questioning your diagnostic status.
In short you should not have to put up with this (although I guess that is not much help since in reality, it is being imposed on you).
Quote:
Regarding my mobility issues he's put that I will begin learning the route home. I can't even begin to express how wrong that is. It makes me wish that I had a diagnosis for that particular problem, but I don't even know what it would be called or who to approach.
What actually is the detail of your problem in this area? Are you geographically confused due to navigation issues, or unable to function well enough (due to environmental factors) so that your ability to navigate is impaired by being environmentally overwhelmed, or something else?
14 May 2009, 9:06 am
You need to get re-diagnosed by an expert. Female aspies have a completely different presentation. We can often appear a lot more social. Tony Attwood has done extensive work on this.
I was first diagnosed as not being an aspie because of my social ability. Later, I was diagnosed with moderate AS. This was confirmed by four professionals later, as I applied for different services. It is not in question whatsoever now.
_________________
I am a very strange female.
http://www.youtube.com/user/whitetigerdream
Don't take life so seriously. It isn't permanent!
14 May 2009, 9:29 am
I will reply to messages fully later on, thank you so much for the practical advice.
Quote:
What actually is the detail of your problem in this area? Are you geographically confused due to navigation issues, or unable to function well enough (due to environmental factors) so that your ability to navigate is impaired by being environmentally overwhelmed, or something else?
I'm not exactly sure, perhaps both. I am overwhelmed (sensory) and it is almost as if my brain shuts down to protect itself. For instance, the last time I tried to cross a road unaided was about 4 years ago, I was crossing to get into the car the opposite side of the road. My mum was in the car, and I crossed and got in. When I got there she was in a state of silent horror and told me that a car had skid to a halt at my knees, and that I had almost been run over, but I had no idea that it had happened at all. A few times friends have grabbed me and a vehicle has gone past an inch from my face, etc.
On the other hand, back when I was in school, a friend realised that I followed people around and asked me to walk in front of him on the way home (so that he could see where I thought we should go). I couldn't even begin to guess despite having walked the same route for years. I could never navigate alone around school or any unfamiliar environment, sometimes I become confused in small spaces, such as flats. I'm moving into a small bungalow but I wouldn't be able to tell you which walls have doors etc.
It's hard for me to communicate the problem because I can't even see where I'm going wrong (or I would naturally correct myself), for example, people working with me suddenly took my problems seriously after they saw a map that I drew, but of course I couldn't see what was so wrong with the map myself..
Other oddities include things like, as a child in primary school when I wanted to go home, instead of finding the door and running out, I would "fly at the window like a bird". I put shopping trolleys lengthwise across aisles in shops, I always bump into people when I'm walking, and I'm always bruised from smacking into objects, doors, etc. On bus routes home from school I used to find myself lost almost every day, unable to communicate where I was aside from "in a pine shop" or "in a phone box", etc.
I think the problem is neurological but I have no idea who to approach with getting it recognised, we've had a lot of help from Guide dogs for the Blind, but even blind people can learn routes (you need routes to use a guide dog) and so even that line of thinking is hindered. Sorry for the wordy reply, just have no idea where to begin.
whitetiger - Who do you think I could approach regarding that?
14 May 2009, 10:22 am
MarchViolets wrote:
I'm not exactly sure, perhaps both.
From what you describe it sounds like both to me.
Quote:
I am overwhelmed (sensory) and it is almost as if my brain shuts down to protect itself. For instance, the last time I tried to cross a road unaided was about 4 years ago, I was crossing to get into the car the opposite side of the road. My mum was in the car, and I crossed and got in. When I got there she was in a state of silent horror and told me that a car had skid to a halt at my knees, and that I had almost been run over, but I had no idea that it had happened at all. A few times friends have grabbed me and a vehicle has gone past an inch from my face, etc.
I was told the closest "diagnostic term" for this would agoraphobia, but I would not suggest using this word with this social worker chap as he is likely to take a simplistic view and interpret that you are frightened into not functioning properly (whereas in fact if you do feel fear of moving around in the environment unassisted, it is probably because you are in real danger as a result of "loosing function" due to over-stimulus).
It might be perhaps be simpler to describe this as being a sensory processing issue that prevents you from making sense of the immediate environment (including detecting and avoiding real and imminent risks to your immediate well-being).
Quote:
On the other hand, back when I was in school, a friend realised that I followed people around and asked me to walk in front of him on the way home (so that he could see where I thought we should go). I couldn't even begin to guess despite having walked the same route for years. I could never navigate alone around school or any unfamiliar environment, sometimes I become confused in small spaces, such as flats. I'm moving into a small bungalow but I wouldn't be able to tell you which walls have doors etc.
This is a "spacial processing" problem clearly, and from the sounds of what you describe, appears to be additional to (rather than merely arising from) any problems arising due to being overwhelmed.
Quote:
It's hard for me to communicate the problem because I can't even see where I'm going wrong (or I would naturally correct myself), for example, people working with me suddenly took my problems seriously after they saw a map that I drew, but of course I couldn't see what was so wrong with the map myself..
Yes, it can be very difficult to explain to someone why you cannot do something they find ridiculously easy, when you lack the benefit of experiencing how on earth they go about doing what to them seems easy.
Quote:
Other oddities include things like, as a child in primary school when I wanted to go home, instead of finding the door and running out, I would "fly at the window like a bird". I put shopping trolleys lengthwise across aisles in shops, I always bump into people when I'm walking, and I'm always bruised from smacking into objects, doors, etc. On bus routes home from school I used to find myself lost almost every day, unable to communicate where I was aside from "in a pine shop" or "in a phone box", etc.
The banging into things is probably a proprioception issue, which does fit with strong sensory processing issues (since proprioception relies on sensory information).
Quote:
I think the problem is neurological but I have no idea who to approach with getting it recognised, we've had a lot of help from Guide dogs for the Blind, but even blind people can learn routes (you need routes to use a guide dog) and so even that line of thinking is hindered. Sorry for the wordy reply, just have no idea where to begin.
I would be very surprised if the issue/s were not neurological.
To summarize what I understand you have explained, you have difficulties arising from sensory processing deficits (resulting in an inability to make sense of your immediate environment when overwhelmed by environmental stimulus, resulting in significant impairments in navigation within the environment), spatial reasoning deficits (with complications for navigation and profound negative effects on your ability to mentally map or meaningfully comprehend environments spatially"), with additional motor-coordination deficits probably entailing proprioception issues.
