Explaining ASD to others

One of the things I have found since my diagnosis is the amount of times I get asked to explain what ASD is, and if its the same for everyone.

My usual responce is:

"Everyones ASD is as similar as their faces. There are similarities, all are made from the same basic parts, but there are many differences and each is unique to its owner.

As for mine, I cannot deal with suspence, I have trouble with children as they do not fit my logical view of the world, and I cannot tell if your being serious or not."

As good as this is, I would love to find a better way to describe ASD, because as soon as I tell people they either start setting example situations and asking 'what would you do . . . ' or start seeing if I can tell if they are being serious when they say things. I don't mind explaining, but I feel like I may do an injustice to other ASD people in some way or another, and that what makes me think I am the best ambassador for ASD.

What are other peoples experiences with explaining ASD to others?

Has anyone come across any great explinations that can put more into words?

Parents
  • Hi Daniel,

    My favourite - mentioned many times on threads, so people are probably bored with it by now! - is to say I'm like a cat in a room full of dogs.  I want to be accepted by the dogs, so I copy some dog behaviours so they won't think I'm odd or aloof.  I run after sticks occasionally.  I demand attention.  But none of these things is natural to me.  I'd just as soon do my own thing, or sleep.  I want attention on my terms.  Nothing else.  But... I also want to try to fit in.  Usually, though, it doesn't work out that well.  And instead of seeing me as a cat trying my best to be a dog - the dogs just see me as a failed dog!

    You're right.  Everyone on the spectrum is an individual.  Everyone has a different mix of behaviours, preferences, abilities.  No two of us is exactly alike.  We're as different from each other as we are from NTs.  It's hard, sometimes, to get people to grasp it.  The computer analogy is good: I don't have a processing error - I have a different operating system.  Still, though, I find people trying to 'normalise' what I tell them.  "I do that, too", etc.  My brother's like that.  He normalises everything.  Even though our lives are so completely different - him with his huge social circle, for instance, against me with no friends at all - he still struggles to understand.  I've given up trying, to be honest.  People either want to try to get it - or they don't.  And it's pointless bashing your head against a wall.

    Here's a meme I made, based on something I read somewhere else on this site.  I also find it useful.

    All the best,

    Tom

  • Hi Tom,

    I like this a lot! Its quite simple and makes people think! I also really like toe computer analogy. I might use that one!

    I also agree about wanting to fit in, and often what tires me out at work is that 'fitting in' can be exhausting. By the time Friday afternoon arrives I am ready for bed, though my children usualy have other ideas.

    I know my colleagues know about my ASD and that they all tell me to be myself, but its so hard to do after a lifetime of acting. I think if I had a diagnosis as a child / young person instead of at 33 I would find being myself easier. As it is I think people diagnosed late have developed an arsenal of coping strategies over years of uncertainty that hide their true selves, and are hard to break down!

  • You've expressed it perfectly.  I'm 58 now and was only diagnosed two years ago - so you can imagine how exhausted I am!  A lifetime of role-learning and play-acting, of feeling anxious even around work colleagues who  know about my condition, and kind of understand... and of coming home exhausted, and just wanting to shut the door for the evening or weekend and be ALONE!

    I work in social care with special needs, so my colleagues - even if they don't have ASC themselves - at least have some grounding in ASC through training.  They all think I'm friendly.  They all find me engaging, and think I'm good at my job.  But it's interesting... I can go in of a morning (usually arriving long before anyone else, because I hate walking into a crowded room).  The others will start to arrive in dribs and drabs, and whilst it's up to about four of us, I'm still engaged with them.  I'm still part of the conversational centre-of-gravity.  By the time it gets up to six or seven, though, I'm beginning to be marginalised - even though I might still be taking part in the conversation, whatever it might be about.  By the time it's around nine or ten of us, though - I'm out of it!  Even if I'm still putting my bit into the conversation, no one is taking any notice of me. 

    That's how it's always happened, throughout life.  I guess it always will be the case now.  I've learned a lot - things that NTs take for granted and can just do.  But clearly it's not enough.

    It's okay.  It doesn't bother me.  I like being on the outside, looking in.  It's why I write Slight smile

  • thanks for sharing your story. i'm mum to a 5 year old. he was diagnosed yesterday and i am trying to learn everything i can to help him. he reads and sings, but almost nearly non verbal. he says words he knows only when he wants to, and they are limited to 1 or 2 at a time. he already has a hard time at school. he has never been invited to any birthday parties. i find many people are just tactless and can be rude because he does something out of turn. should i be telling people he's autistic so he can be excused say for being loud. this is so hard and I've only just began...

  • Hi Lonewarrior,

    Another great analogy! I like the difference between I phones and others, as this is something people can quickly understand. 

    I have tried all of the above suggestions in the whole thread so far, and for my children the phone one works best, but for my partner she loves the cats and dogs analogy. I think its good to have a collection of different ones depending on the audience, but its definately easier having something simple to give people and let them do the thinking!

  • My latest way of explaining ASD is,well I am an early apple imac computer and you are a windows based operating system. Or folks who use iPhones find using windows based phones difficult and vice versa,

    but both phones do the Same! Even satnavsary greatly, I can navigate with a tom tom but haven't a clue using agarmin, but both look similar and both get you where you need to be(well most times.

    Early Apple Mac computers didn't have games but were stable and very powerful with number crunching and business user friendly. like me no need for fancy frills or flashy colours. Windows pc's were a bit unstable and tried to do everything but not one thing brilliantly,unstable and slow.lots of noisy colourful games.

    well that's my analogy.

  • My experience in Suffolk was pretty similar, with an AQ test, GP referal, Q and A at the county's Autism Diagnosis Service (Coincidently in my town for Suffolk and Norfolk) then a follow up 6 months later with my partner as my 'plus one' which ended in a diagnosis. I return next week for a post diagnosis appointment with details of support access etc.

    I have to say I received great service, with only the waiting being a negative, but thats down to oversubscription and lack of resource rather than any problems with the team where I live.

    It has given me a fresh outlook on life, and I am looking into changes with how I have traditionally dealt with anxiety, depression and anger. Hopefully going back to my GP with the diagnosis behind will help me look at ways to improve my life as a whole rather than sedating the symptoms.

    There is certainly nothing to loose in seeing where it will go, and you may learn things that you can transfer into helping with your family

  • Hi Limegreenwelly,

    I was seeing a therapist for a time, and she was the one who first suggested I get a referral.  I saw my GP, who put the referral through.  The next thing that happened is that I was sent the AQ test (by email, I think) to complete.  I scored 41.  I then had a visit, several weeks later, from someone from the local autism unit in Sevenoaks (I live in Kent).  He did a one-hour Q and A session with me at home, then said I'd be hearing.  Some months later (I can't remember how long), I got a letter calling me in for a formal diagnostic interview.  It said it was important that I took someone with me, if possible, who'd known me all my life.  My mother came with me that day.  Something like 3 months later, I got the diagnosis.  From initial referral to actual diagnosis took just over two years.

    I was 56 when I got the diagnosis - so you're a relative youngster!  Overwhelmingly, it was a great feeling to get that - even at my age.  It enabled me to make sense of my life at last.  It gave me the answers to questions that had bugged me since my early teens.  I had a terrible time at school.  I was bottom of my year most years and left without qualifications.  I was bullied most of the way through.  In my late 20s, though, I got into university and left with a good degree.  Schools can be very tough places for anyone on the spectrum - especially if it's undiagnosed.

    I suppose the timescale for diagnosis depends on where you live.   A good place to start, though, is with the AQ test if you haven't done it before.  If it seems to be indicative - scores above about 32 usually are - then go to your GP and seek a referral.  If they try to put you off, pursue it.  Insist.  If it's what you want, you deserve to have it.

    Here's a link to the test if you haven't taken it yet - though I guess you probably have.

    Good luck.

    Tom

    http://aspergerstest.net/aq-test/

  • oh God loving the dog/ cat explanation and this last bit about work too. I'm meticulous, dedicated, I love knowing my job inside out, and will just get on with it! Just a mum now, 47. New to the forums, as yet undiagnosed hf asd with inattentive ADHD thrown in! Is it difficult to get a diagnosis as an adult? I've just taken a few steps at the moment, been thinking about it since last October! Now I've come to the conclusion my 13 year old is a similar hf asd like me I need to do something. He's failed at mainstream school in the past year and is in a pupil referral unit at the moment. 

  • I've been writing since I was 10, and started to isolate for the first time.  It's my way of making sense of what's in my head, and of communicating with the world.

    In all my jobs, I've been praised as being meticulous, conscientious, dedicated... getting the job done properly, if slower than most of the others.  I don't cut corners.  I don't like to leave anything unfinished.

    I've never been a manager, and don't think I'd want to be.  I'm too much of a people-pleaser.  And I prefer to be given a job to get on with, and to get on with it.  I'd find it hard having to be responsible for others in that sense.

Reply
  • I've been writing since I was 10, and started to isolate for the first time.  It's my way of making sense of what's in my head, and of communicating with the world.

    In all my jobs, I've been praised as being meticulous, conscientious, dedicated... getting the job done properly, if slower than most of the others.  I don't cut corners.  I don't like to leave anything unfinished.

    I've never been a manager, and don't think I'd want to be.  I'm too much of a people-pleaser.  And I prefer to be given a job to get on with, and to get on with it.  I'd find it hard having to be responsible for others in that sense.

Children
  • thanks for sharing your story. i'm mum to a 5 year old. he was diagnosed yesterday and i am trying to learn everything i can to help him. he reads and sings, but almost nearly non verbal. he says words he knows only when he wants to, and they are limited to 1 or 2 at a time. he already has a hard time at school. he has never been invited to any birthday parties. i find many people are just tactless and can be rude because he does something out of turn. should i be telling people he's autistic so he can be excused say for being loud. this is so hard and I've only just began...

  • Hi Lonewarrior,

    Another great analogy! I like the difference between I phones and others, as this is something people can quickly understand. 

    I have tried all of the above suggestions in the whole thread so far, and for my children the phone one works best, but for my partner she loves the cats and dogs analogy. I think its good to have a collection of different ones depending on the audience, but its definately easier having something simple to give people and let them do the thinking!

  • My latest way of explaining ASD is,well I am an early apple imac computer and you are a windows based operating system. Or folks who use iPhones find using windows based phones difficult and vice versa,

    but both phones do the Same! Even satnavsary greatly, I can navigate with a tom tom but haven't a clue using agarmin, but both look similar and both get you where you need to be(well most times.

    Early Apple Mac computers didn't have games but were stable and very powerful with number crunching and business user friendly. like me no need for fancy frills or flashy colours. Windows pc's were a bit unstable and tried to do everything but not one thing brilliantly,unstable and slow.lots of noisy colourful games.

    well that's my analogy.

  • My experience in Suffolk was pretty similar, with an AQ test, GP referal, Q and A at the county's Autism Diagnosis Service (Coincidently in my town for Suffolk and Norfolk) then a follow up 6 months later with my partner as my 'plus one' which ended in a diagnosis. I return next week for a post diagnosis appointment with details of support access etc.

    I have to say I received great service, with only the waiting being a negative, but thats down to oversubscription and lack of resource rather than any problems with the team where I live.

    It has given me a fresh outlook on life, and I am looking into changes with how I have traditionally dealt with anxiety, depression and anger. Hopefully going back to my GP with the diagnosis behind will help me look at ways to improve my life as a whole rather than sedating the symptoms.

    There is certainly nothing to loose in seeing where it will go, and you may learn things that you can transfer into helping with your family

  • Hi Limegreenwelly,

    I was seeing a therapist for a time, and she was the one who first suggested I get a referral.  I saw my GP, who put the referral through.  The next thing that happened is that I was sent the AQ test (by email, I think) to complete.  I scored 41.  I then had a visit, several weeks later, from someone from the local autism unit in Sevenoaks (I live in Kent).  He did a one-hour Q and A session with me at home, then said I'd be hearing.  Some months later (I can't remember how long), I got a letter calling me in for a formal diagnostic interview.  It said it was important that I took someone with me, if possible, who'd known me all my life.  My mother came with me that day.  Something like 3 months later, I got the diagnosis.  From initial referral to actual diagnosis took just over two years.

    I was 56 when I got the diagnosis - so you're a relative youngster!  Overwhelmingly, it was a great feeling to get that - even at my age.  It enabled me to make sense of my life at last.  It gave me the answers to questions that had bugged me since my early teens.  I had a terrible time at school.  I was bottom of my year most years and left without qualifications.  I was bullied most of the way through.  In my late 20s, though, I got into university and left with a good degree.  Schools can be very tough places for anyone on the spectrum - especially if it's undiagnosed.

    I suppose the timescale for diagnosis depends on where you live.   A good place to start, though, is with the AQ test if you haven't done it before.  If it seems to be indicative - scores above about 32 usually are - then go to your GP and seek a referral.  If they try to put you off, pursue it.  Insist.  If it's what you want, you deserve to have it.

    Here's a link to the test if you haven't taken it yet - though I guess you probably have.

    Good luck.

    Tom

    http://aspergerstest.net/aq-test/

  • oh God loving the dog/ cat explanation and this last bit about work too. I'm meticulous, dedicated, I love knowing my job inside out, and will just get on with it! Just a mum now, 47. New to the forums, as yet undiagnosed hf asd with inattentive ADHD thrown in! Is it difficult to get a diagnosis as an adult? I've just taken a few steps at the moment, been thinking about it since last October! Now I've come to the conclusion my 13 year old is a similar hf asd like me I need to do something. He's failed at mainstream school in the past year and is in a pupil referral unit at the moment.