Frequently asked questions
This page will be updated regularly, as we find out which questions people actually ask. We have a small team of administrators who tend to be too close to the project to see which bits are less clear to outsiders. Please help us improve this page by submitting your own questions below.
I added my story to the homepage, when will it be posted?
If the site admins happen to be online, it'll be less than 5 minutes. If not, probably tomorrow or the day after. When you submit your story, we get an email notification and then have to manually add each story to the "Your Experiences" page. The same will be true of all questions submitted on this page.
Why do you ask for my email address?
This is just so the admins can get in touch with you if there is anything in the story that they feel might need clarifying, and so that the Weebly server knows where stories come from.
Will other people be able to see my email address?
Absolutely not! Don't worry!
We will never send you any unsolicited mail, publish anything identifiable about you or pass your details on.
Besides which, we delete any messages with your email address in once your story has been published.
We will never send you any unsolicited mail, publish anything identifiable about you or pass your details on.
Besides which, we delete any messages with your email address in once your story has been published.
where is the rest of my story?
Longer stories may be posted so that only the first paragraph is visible. Clicking on the "Read More" link will reveal the rest.
why can't I comment on the stories?
At the present time, comments are disabled on all stories to encourage everyone to post their own story. We feel that the vast majority of comments would, in practise, be variations of "Yeah, that happened to me", "OMG! That's terrible" or "I don't believe you".
The "Speaking for Ourselves" campaign is better served by a larger number of individual stories than it is by comments on one story; if we get big enough to make a difference, it will be much easier to say we have received so many hundred stories about, say, queer autistics having their sexualities dismissed because of their neurotype than it would be to try and find this information out from strings of comments.
Expressions of shocked sympathy are of no benefit to our cause and many autistics have been hurt previously by others dismissing their experiences.
If you would like to have conversations about your experiences online, you can do so. There are 2 large international forums for autistic people, aspiesforfreedom.com and http://www.wrongplanet.net/ . We also have a Facebook group, where anyone can post their views or relevant links (https://www.facebook.com/groups/304088563031195/?fref=ts), and a Twitter page where you can follow us, post your experiences and so on (https://twitter.com/SfOurselves).
The "Speaking for Ourselves" campaign is better served by a larger number of individual stories than it is by comments on one story; if we get big enough to make a difference, it will be much easier to say we have received so many hundred stories about, say, queer autistics having their sexualities dismissed because of their neurotype than it would be to try and find this information out from strings of comments.
Expressions of shocked sympathy are of no benefit to our cause and many autistics have been hurt previously by others dismissing their experiences.
If you would like to have conversations about your experiences online, you can do so. There are 2 large international forums for autistic people, aspiesforfreedom.com and http://www.wrongplanet.net/ . We also have a Facebook group, where anyone can post their views or relevant links (https://www.facebook.com/groups/304088563031195/?fref=ts), and a Twitter page where you can follow us, post your experiences and so on (https://twitter.com/SfOurselves).
will my story be edited in any way?
Generally, no, we will leave your story exactly as you write it. In some cases, minor changes will be made to the story or your name:
If the post contains any personal details that could be used to find either the author or another person involved (for example a story about an experience with your doctor), such details will be removed. such details will be replaced by a brief description in square brackets (eg "Dr Smith, GP at the windings surgery" would be edited to "[Doctor]"). This does not apply to public figures or to anyone who is only mentioned by their first name and/or relationship to the author.
To protect anonymity, we will generally only post first names if the author of the post appears to be using their real name. If you want to, you can add the initial of your surname, post using a title and your surname, or make something up. Obviously, if we receive a story from "Bart Simpson" we are likely to assume you're using a fake name, and so will post it as is (so if your real name looks fake, consider using a fake name to protect yourself)
If the post contains any personal details that could be used to find either the author or another person involved (for example a story about an experience with your doctor), such details will be removed. such details will be replaced by a brief description in square brackets (eg "Dr Smith, GP at the windings surgery" would be edited to "[Doctor]"). This does not apply to public figures or to anyone who is only mentioned by their first name and/or relationship to the author.
To protect anonymity, we will generally only post first names if the author of the post appears to be using their real name. If you want to, you can add the initial of your surname, post using a title and your surname, or make something up. Obviously, if we receive a story from "Bart Simpson" we are likely to assume you're using a fake name, and so will post it as is (so if your real name looks fake, consider using a fake name to protect yourself)
eNGLISH ISN'T MY FIRST LANGUAGE - DOES THIS MATTER?
Not at all! In fact, we encourage you to post in your own language as much as possible so we can get a better idea of what experiences people have from all over the world.
One of the admins is competent in French and Japanese and a bit obsessive with languages, if that's any small consolation at all.
On our Twitter page, we have followers from Japan, France, the USA and Holland (Among other places). Hopefully we'll have more people from other parts of the world participating very soon.
However, if your post is in another language, we may translate it. Rest assured that if we do decide to translate it, then we will NEVER use Google Translate or robots - only human beings.
One of the admins is competent in French and Japanese and a bit obsessive with languages, if that's any small consolation at all.
On our Twitter page, we have followers from Japan, France, the USA and Holland (Among other places). Hopefully we'll have more people from other parts of the world participating very soon.
However, if your post is in another language, we may translate it. Rest assured that if we do decide to translate it, then we will NEVER use Google Translate or robots - only human beings.
is there anything you won't post?
Yes. We won't post anything which goes against our aims. In particular:
1) Spam. this includes promoting therapies for autistic people. I know they're more relevant than the usual too-good-to-be-true-get-rich-quick schemes and ethically questionable dating sites that are considered spam everywhere, but this is not the place. Our admins don't have the time or energy to check out everything you might have found helpful, and many therapies can be harmful or have very little evidence of success.
2) Anything that perpetuates the prejudice we're trying to fight. This includes but is not limited to statements that ism "ruined" your life/the life of a loved one, sympathising with child murderers because their victims were autistic, vaccine based conspiracy theories and anything suggesting that there is an autism "epidemic"; "apocalypse" or similar.
3) Autistic supremacy. I understand why the idea that we are more "highly evolved" is appealing, but evolution doesn't work that way. simply put, evolutionary pressures favour anything that either makes an individual more likely to survive to sexual maturity, or that increases their chances of reproducing. I am yet to see any reason to believe that either of these thing is true for autism. This attitude also alienates potential NT allies.
4) Hatemail aimed at the admins. We might post about this if we're having a slow week, or if it's particularly ridiculous. If we do this, we may quote you. You will never be quoted out of context, and we will not mock your spelling and grammar, but you are unlikely to come out looking dignified. In short, don't do it.
1) Spam. this includes promoting therapies for autistic people. I know they're more relevant than the usual too-good-to-be-true-get-rich-quick schemes and ethically questionable dating sites that are considered spam everywhere, but this is not the place. Our admins don't have the time or energy to check out everything you might have found helpful, and many therapies can be harmful or have very little evidence of success.
2) Anything that perpetuates the prejudice we're trying to fight. This includes but is not limited to statements that ism "ruined" your life/the life of a loved one, sympathising with child murderers because their victims were autistic, vaccine based conspiracy theories and anything suggesting that there is an autism "epidemic"; "apocalypse" or similar.
3) Autistic supremacy. I understand why the idea that we are more "highly evolved" is appealing, but evolution doesn't work that way. simply put, evolutionary pressures favour anything that either makes an individual more likely to survive to sexual maturity, or that increases their chances of reproducing. I am yet to see any reason to believe that either of these thing is true for autism. This attitude also alienates potential NT allies.
4) Hatemail aimed at the admins. We might post about this if we're having a slow week, or if it's particularly ridiculous. If we do this, we may quote you. You will never be quoted out of context, and we will not mock your spelling and grammar, but you are unlikely to come out looking dignified. In short, don't do it.
your homepage talks about "autistic people", isn't it more polite to say "people with autism"?
No. The admin team prefer identity first language, as do all the other autistic people we've asked. some parents and professionals do seem to prefer person first, but as this is primarily an autistic community site, we will be using identity first.
We feel that person first distracts the speaker. If you convince yourself that you're using the most politically correct terminology, you might believe that you're an effective ally to our community while still perpetuating harmful stereotypes or dismissing autistic self advocates. If you need to remind yourself that we're people, that's your problem, not ours.
We feel that person first distracts the speaker. If you convince yourself that you're using the most politically correct terminology, you might believe that you're an effective ally to our community while still perpetuating harmful stereotypes or dismissing autistic self advocates. If you need to remind yourself that we're people, that's your problem, not ours.
what does_____ mean?
See Glossary
glossary
There are some terms used either by the autistic community or by professionals describing autism. These terms might be used on this site, and may not be clear to everyone.
ABA: Applied Behaviour Analysis. Used to be known as 'behaviour modification'. A form of behaviousrism which works by analysing how the patient behaves and using the findings from how they react in particular situations and respond to certain stimuli and then aiming to correct unwanted behaviours. Although it is commonly used when treating autism, it is NOT actually therapy for autism.
Asperger Syndrome: A diagnosis that sometimes means a person has autism, but they have average or above average IQ, or that they show "autistic symptoms" but had no "significant" language delay. This vagueness is the reason why the diagnosis of Aspergers will not be included in the DSM V as a separate condition.
Assburgers: An insult aimed at people with Asperger's Syndrome. Most frequently used as a "joke" intended to invalidate their experiences.
Aspie: Informal, identity first term for someone with a diagnosis of Asperger's Syndrome. Asperger's Syndrome is named after Hans Asperger and is used to describe someone who is autistic, but has average or above IQ scores and/or no significant delay in language development. This is likely to become obsolete at some point after the publication of the DSM V, as the diagnosis will not exist formally after this time.
BIP: Behavioural Intervention Plan. AKA Behaviour Management Plan, Behavioural Support Plan, Positive Behavioural Support Plan [taken from http://specialchildren.about.com/od/behavioranddiscipline/g/BIP.htm]. BIPs work like IEPs in that they are tailored to the persons' needs in a school/work/home/social environment, but focus on how to reinforce behaviour which is seen as positive and how to minimise/reduce behaviour which is seen as negative. They are most commonly used in a schooling environment.
Cisgender: If you definitely identify as male or female (and/or have never questioned your gender identity), you are most probably cisgendered. The opposite to transgendered (sometimes known as trans*).
Comorbid: A condition that is not a symptom of, but often occurs alongside, another condition. Common autistic comorbids include depression, epilepsy, dietary intolerances specific learning difficulties and OCD. Statistically, autistics are significantly more likely to have one or more of these conditions than non-autistic people.
Cousin: Someone who isn't autistic, but seems to "get" the autistic experience. They are generally neurodiverse [See also: ND], and often have at least one of the common comorbid conditions. This definition only applies to "Cousin" with an uppercase C. When written in lowercase i.e."cousin" - here and everywhere else - it means the offspring of your parent's sibling.
Curebie: Derogatory term describing any individual or organisation that advocates an autism "cure". A cure is seen by many autistics as undesirable. Many autistics don't believe a cure is possible and worry that young autistics will be hurt by hearing the adults who are supposed to love them talk about removing something that they're unable to separate from themselves. Many autistics also feel that the money spent looking for this "magic pill" could be much better spent elsewhere.
DSM: Diagnostic and Statistical Manual of Mental Disorders.
Genderqueer: One form of gender identity which people who are non-cisgendered [See also: Cisgender] identify with.
LFA/HFA: Low functioning autistic/high functioning autistic. There is some debate about the usefulness of these terms. functioning level is generally a measure of the amount of verbal communication a person is generally capable of. It has been said that autistics are considered to be high functioning when society wants to tell them that they don't need any help (i.e. are considered "too able"/"too normal" for certain things), and low functioning when it is not considered to be worthwhile helping one or more autistics.
ND: Neurodiverse. Anyone with a mental health issue, learning disability or other type of "wonky brain" is ND.
NT: Neurotypical. Anyone who is not ND [see also: ND] is NT. The term exists because calling outsiders "normal" makes it harder for minority communities to form a strong sense of identity, as "abnormal" has strong, negative connotations (and NTs can also be very strange people).
Stimming: Short for "self-stimulation". If you are NT, you may recognise some of these gestures in yourself and/or someone else. Nearly everybody does it, but stims are more pronounced in people on the autistic spectrum. These repetitive - and sometimes compulsive - actions are done when the person in a strong emotional state (e.g. stress/fear/excitement). Stims help people to regulate and/or express their emotions, concentrate on tasks and make sense of their environment.
Stimming can also be vocal (humming, singing and/or talking to oneself. The talking can range from a sound or two to a full-on monologue or anything in between. Definition partially lifted from http://www.urbandictionary.com/define.php?term=stimming
There are other terms which might be country specific. here are some UK terms which might be relevant:
GP: General Practitioner. A local doctor who can make referrals to specialists
SENCO: Special Educational Needs Co-ordinator. A teacher who is also in charge of organising support for any students who need it.
IEP: Individual Education Plan. The idea behind IEPs is that the school, the student and the student's guardians/parents/carers and any other relevant keyworkers come up with a tailored education plan and/or timetable specific to the student's needs. IEPs are reviewed at least once a year
NHS: The UK's National Health Service; a form of public healthcare.
If you have any terms that you know are specific to your country, please let us know (Although this website is in English, we encourage you to post in your own language so we can really get a feel for how autism affects people globally.)
ABA: Applied Behaviour Analysis. Used to be known as 'behaviour modification'. A form of behaviousrism which works by analysing how the patient behaves and using the findings from how they react in particular situations and respond to certain stimuli and then aiming to correct unwanted behaviours. Although it is commonly used when treating autism, it is NOT actually therapy for autism.
Asperger Syndrome: A diagnosis that sometimes means a person has autism, but they have average or above average IQ, or that they show "autistic symptoms" but had no "significant" language delay. This vagueness is the reason why the diagnosis of Aspergers will not be included in the DSM V as a separate condition.
Assburgers: An insult aimed at people with Asperger's Syndrome. Most frequently used as a "joke" intended to invalidate their experiences.
Aspie: Informal, identity first term for someone with a diagnosis of Asperger's Syndrome. Asperger's Syndrome is named after Hans Asperger and is used to describe someone who is autistic, but has average or above IQ scores and/or no significant delay in language development. This is likely to become obsolete at some point after the publication of the DSM V, as the diagnosis will not exist formally after this time.
BIP: Behavioural Intervention Plan. AKA Behaviour Management Plan, Behavioural Support Plan, Positive Behavioural Support Plan [taken from http://specialchildren.about.com/od/behavioranddiscipline/g/BIP.htm]. BIPs work like IEPs in that they are tailored to the persons' needs in a school/work/home/social environment, but focus on how to reinforce behaviour which is seen as positive and how to minimise/reduce behaviour which is seen as negative. They are most commonly used in a schooling environment.
Cisgender: If you definitely identify as male or female (and/or have never questioned your gender identity), you are most probably cisgendered. The opposite to transgendered (sometimes known as trans*).
Comorbid: A condition that is not a symptom of, but often occurs alongside, another condition. Common autistic comorbids include depression, epilepsy, dietary intolerances specific learning difficulties and OCD. Statistically, autistics are significantly more likely to have one or more of these conditions than non-autistic people.
Cousin: Someone who isn't autistic, but seems to "get" the autistic experience. They are generally neurodiverse [See also: ND], and often have at least one of the common comorbid conditions. This definition only applies to "Cousin" with an uppercase C. When written in lowercase i.e."cousin" - here and everywhere else - it means the offspring of your parent's sibling.
Curebie: Derogatory term describing any individual or organisation that advocates an autism "cure". A cure is seen by many autistics as undesirable. Many autistics don't believe a cure is possible and worry that young autistics will be hurt by hearing the adults who are supposed to love them talk about removing something that they're unable to separate from themselves. Many autistics also feel that the money spent looking for this "magic pill" could be much better spent elsewhere.
DSM: Diagnostic and Statistical Manual of Mental Disorders.
Genderqueer: One form of gender identity which people who are non-cisgendered [See also: Cisgender] identify with.
LFA/HFA: Low functioning autistic/high functioning autistic. There is some debate about the usefulness of these terms. functioning level is generally a measure of the amount of verbal communication a person is generally capable of. It has been said that autistics are considered to be high functioning when society wants to tell them that they don't need any help (i.e. are considered "too able"/"too normal" for certain things), and low functioning when it is not considered to be worthwhile helping one or more autistics.
ND: Neurodiverse. Anyone with a mental health issue, learning disability or other type of "wonky brain" is ND.
NT: Neurotypical. Anyone who is not ND [see also: ND] is NT. The term exists because calling outsiders "normal" makes it harder for minority communities to form a strong sense of identity, as "abnormal" has strong, negative connotations (and NTs can also be very strange people).
Stimming: Short for "self-stimulation". If you are NT, you may recognise some of these gestures in yourself and/or someone else. Nearly everybody does it, but stims are more pronounced in people on the autistic spectrum. These repetitive - and sometimes compulsive - actions are done when the person in a strong emotional state (e.g. stress/fear/excitement). Stims help people to regulate and/or express their emotions, concentrate on tasks and make sense of their environment.
Stimming can also be vocal (humming, singing and/or talking to oneself. The talking can range from a sound or two to a full-on monologue or anything in between. Definition partially lifted from http://www.urbandictionary.com/define.php?term=stimming
There are other terms which might be country specific. here are some UK terms which might be relevant:
GP: General Practitioner. A local doctor who can make referrals to specialists
SENCO: Special Educational Needs Co-ordinator. A teacher who is also in charge of organising support for any students who need it.
IEP: Individual Education Plan. The idea behind IEPs is that the school, the student and the student's guardians/parents/carers and any other relevant keyworkers come up with a tailored education plan and/or timetable specific to the student's needs. IEPs are reviewed at least once a year
NHS: The UK's National Health Service; a form of public healthcare.
If you have any terms that you know are specific to your country, please let us know (Although this website is in English, we encourage you to post in your own language so we can really get a feel for how autism affects people globally.)