Outsider looking in

Hi Amy,

I, too, have worked with autistic people for some years - and am autistic myself, as I found out 4 years ago (at the ripe age of 56!)  It's heartening for me to read your post, and to know of your genuine interest to gain better understanding.  Much 'understanding' out there is often informed, I think, by pop culture stereotypes.  Even in a specialist autism unit where I worked, there was still a large gap of understanding with some staff.

I suppose I can only give you my own thoughts on the matter.  In my field of work, most of the people have been what are termed generally 'low-functioning' in that they have other complex learning disabilities.  Much of the work, therefore, was focused on behaviour management: looking for ways to minimise triggers for challenging behaviour, using methods like PECS to help people to come to terms with change, and so on.  In my last place of work in particular, which specialised in autism, there was an entirely non-aversive approach; it was about accepting the individuals as having individual needs, and tending to shape the day and activities to suit them rather than being strict on such things.  This approach worked quite well, because it was more about accepting difference and working with it, rather than trying to adapt it to fit in with non-autistic norms.

With higher-functioning people (I dislike the 'functioning' terms, but they seem pretty standard as definers at the moment), the issues can be quite different. Although employment figures are low in comparison to the rest of the population, a good number of us hold down jobs, maintain homes, drive cars, manage budgets and get along very well out in society.  In many ways, then, we can be perceived to be just like everyone else.  And there is an expectation in many people's minds, therefore - employers, colleagues, family members - that we should be just like everyone else in every other respect.  Things like coping with change, dealing with social situations, managing emotions, working in sensory-challenging environments, and so on.  This is where we often run into problems.  We have protections under legislation like the Autism Act and the Equality Act, etc... yet, as you will see if you look around at some people's experiences on these forums, these 'protections' are often either ignored or flouted.  We have a right to ask for 'reasonable adjustments', but some employers can still be difficult with this.  I think it's part of having an 'invisible' condition.  It's almost like 'If everyone else can do it, so can you.'  Even having a diagnosis doesn't always help.  You might often hear 'stop using your condition as an excuse.'  Many of us, therefore, wear 'masks' in order to fit in.  Essentially, then, we're putting down our natural behaviour.  This can do untold psychological damage.  Like, in my favourite analogy, the cat trying to behave like a dog in a world of dogs - because it doesn't want to feel left out by the dogs (or even attacked by them!)

Autism, like physical disabilities, is - in my opinion - in many ways socially-constructed.  So it's good to see that some research now is moving away from the idea of 'impairments' that need 'correcting' and more towards an understanding of difference.  So, less 'behaviour management' and more 'understanding of perceptions and responses'.  You've probably come across the 'double empathy' problem in your work and studies.  Another forum member recently referred me to some recent research focusing on 'predictive coding' as a way of looking at the differences between autistic and non-autistic thinking and responding.  Here's a link to the article in case you haven't come across it:

How autism may stem from problems of prediction

Another part of the problem, of course, is the same as that faced by most minorities.  If your behaviour, thinking, responses, etc go against what the majority see as 'normal', then it's too easy to dismiss it as 'wrong' and in need of correction.  I think a lot of therapies are built up around that idea of 'correcting' things.  They may be useful for emotional regulation and intelligence.  I think I'd probably benefit from something like that, because I tend to have extremes of emotion which completely take over my thought processes.  There are things like adaptive CBT out there.  Many  people use medications.  I only use Diazepam as a prn in cases of extreme anxiety.  Otherwise, I used anti-depressants for years - without success.  Largely, I think, because they're formulated for a neurological template that autistic people don't have.  Having said that, other forum members use them with success.  The minority/majority imbalance can also lead (I admit, it did for me) to a 'them and us' situation with neurotypical vs neurodiverse.  That's another issue that needs to be looked at.  We're all human at the end of the day.  A recent thread on that subject may also be of interest to you:

I hate the term 'neurotypical'.

I hope some of that can help.

Best regards,

Tom

Hi Amy,

I, too, have worked with autistic people for some years - and am autistic myself, as I found out 4 years ago (at the ripe age of 56!)  It's heartening for me to read your post, and to know of your genuine interest to gain better understanding.  Much 'understanding' out there is often informed, I think, by pop culture stereotypes.  Even in a specialist autism unit where I worked, there was still a large gap of understanding with some staff.

I suppose I can only give you my own thoughts on the matter.  In my field of work, most of the people have been what are termed generally 'low-functioning' in that they have other complex learning disabilities.  Much of the work, therefore, was focused on behaviour management: looking for ways to minimise triggers for challenging behaviour, using methods like PECS to help people to come to terms with change, and so on.  In my last place of work in particular, which specialised in autism, there was an entirely non-aversive approach; it was about accepting the individuals as having individual needs, and tending to shape the day and activities to suit them rather than being strict on such things.  This approach worked quite well, because it was more about accepting difference and working with it, rather than trying to adapt it to fit in with non-autistic norms.

With higher-functioning people (I dislike the 'functioning' terms, but they seem pretty standard as definers at the moment), the issues can be quite different. Although employment figures are low in comparison to the rest of the population, a good number of us hold down jobs, maintain homes, drive cars, manage budgets and get along very well out in society.  In many ways, then, we can be perceived to be just like everyone else.  And there is an expectation in many people's minds, therefore - employers, colleagues, family members - that we should be just like everyone else in every other respect.  Things like coping with change, dealing with social situations, managing emotions, working in sensory-challenging environments, and so on.  This is where we often run into problems.  We have protections under legislation like the Autism Act and the Equality Act, etc... yet, as you will see if you look around at some people's experiences on these forums, these 'protections' are often either ignored or flouted.  We have a right to ask for 'reasonable adjustments', but some employers can still be difficult with this.  I think it's part of having an 'invisible' condition.  It's almost like 'If everyone else can do it, so can you.'  Even having a diagnosis doesn't always help.  You might often hear 'stop using your condition as an excuse.'  Many of us, therefore, wear 'masks' in order to fit in.  Essentially, then, we're putting down our natural behaviour.  This can do untold psychological damage.  Like, in my favourite analogy, the cat trying to behave like a dog in a world of dogs - because it doesn't want to feel left out by the dogs (or even attacked by them!)

Autism, like physical disabilities, is - in my opinion - in many ways socially-constructed.  So it's good to see that some research now is moving away from the idea of 'impairments' that need 'correcting' and more towards an understanding of difference.  So, less 'behaviour management' and more 'understanding of perceptions and responses'.  You've probably come across the 'double empathy' problem in your work and studies.  Another forum member recently referred me to some recent research focusing on 'predictive coding' as a way of looking at the differences between autistic and non-autistic thinking and responding.  Here's a link to the article in case you haven't come across it:

How autism may stem from problems of prediction

Another part of the problem, of course, is the same as that faced by most minorities.  If your behaviour, thinking, responses, etc go against what the majority see as 'normal', then it's too easy to dismiss it as 'wrong' and in need of correction.  I think a lot of therapies are built up around that idea of 'correcting' things.  They may be useful for emotional regulation and intelligence.  I think I'd probably benefit from something like that, because I tend to have extremes of emotion which completely take over my thought processes.  There are things like adaptive CBT out there.  Many  people use medications.  I only use Diazepam as a prn in cases of extreme anxiety.  Otherwise, I used anti-depressants for years - without success.  Largely, I think, because they're formulated for a neurological template that autistic people don't have.  Having said that, other forum members use them with success.  The minority/majority imbalance can also lead (I admit, it did for me) to a 'them and us' situation with neurotypical vs neurodiverse.  That's another issue that needs to be looked at.  We're all human at the end of the day.  A recent thread on that subject may also be of interest to you:

I hate the term 'neurotypical'.

I hope some of that can help.

Best regards,

Tom