autism should be hidden away?

[amberlight]

I was given a copy of an email from an autism charity yesterday. In it, the person said that people on the autism spectrum surely all wanted no-one else to know that we're autistic.

The subject was autism assistance dogs and whether they are of use in the workplace for some of us. The writer said that such dogs would surely be seen as nothing more than a badge of difference, and that they couldn't imagine that people on the autism spectrum would want anyone to know that they are in any way different.

The writer also said that most people on the autism spectrum want to work in computers or admin jobs and therefore a dog wouldn't have a purpose as a social skills 'tool' or have any other useful workplace function anyway.

The writer also said that people who are more profoundly affected by autism are pretty much unemployable anyway (!), whereas the higher functioning people wouldn't want this kind of support.

This is all very odd. Guide dogs and assistance dogs work with people who are blind, deaf, mobility-impaired, have epilepsy, etc. They already go into workplaces to support all those people, and to my knowledge none of those people believe the dog is a way for people to be prejudiced against their disability. Why would it be different for us, if we wanted such a dog?

I have an autism assistance dog. He's absolutely great. it's an informal scheme so far, but I'd personally love to see it formalised. I work with the Dogs for the Disabled PAWS scheme, helping train their staff on the autism spectrum. The scheme helps hundreds of families who see the benefits of having a dog for their child on the autism spectrum.

So, as parents of children on the autism spectrum, do you believe that this person is right - that your child should only wish to work in IT or admin away from places where social skills are important?

When they're older, would you see an assistance dog as a negative thing that singles out a worker as 'different'?

Would you like your children to have the option of an assistance dog if they so chose? (i.e. would you like it if the dog helped them to settle into work, make friends, relax, not over-focus on things, be better at timekeeping etc? Would you like it if a dog could help your child's future independence?)

Or do you believe, like this person at a large autism charity, that dogs are going to be negative things for adults on the autism spectrum? He didn't seem to have asked anyone before announcing this, so I thought I would.

I'm with Givemesleep on this...

My son (mod ASD mod learning difficulties) could possibly access the workplace with support. But a dog wouldn't help him learn how to catch a bus, talk him through his daily tasks etc, help him negotiate the social stuff or read a timetable for him.. he needs support that can talk to him. I can't see what an assistance dog could give him that any pet in the home couldn't.. ie affection and relaxation.

I also work with individuals with severe ASD and learning difficulties and not one has ever gone on to a job..of any kind; the degree of their difficulty precludes employment and most of their families are simply fighting for enough care and respite to keep them at home, let alone employed:( A dog would be another commitment ..

I just can't see a place where a dog for people with autism is really necessary in the way a dog for the deaf/blind compensates for a 'missing' function. A pleasure, and a companion for some, certainly, but that is the same for anyone who likes the company of a dog!

Mumi, you say that "The writer obviously has trouble understanding that people with ASD should not have to account for others' perception of it.
People just are different, with ASD or without.
If someone at work decides to dye their hair fire engine red, or only drinks herbal tea, this is seem as "different", but accepted - why can't these dogs be?"

The thing is, you may have difficulty holding down a job if you behave in an "ASD" way - unless your employer understands that you have a specific difficulty that needs to be accomodated.
If I asked a new employee "to go around the library and collect any books you see on desks" - I would really mean - "please pick up any books that are clearly finished with"

I would be exasperated with someone who started picking books from under the noses of library users - or from desks where patrons had just wandered off for a minute or two.

If I knew that person had autism, I would make allowances and make accomodations for them. If I didn't know the reason, I would assume they were an idiot or bloody minded and they would probably fail their probation - and be out of a job.

I think it is really important to protect yourself by declaring any disability to your employer beforehand - though not necessarily to all work colleagues.

No I wouldn't have wanted a dog to take to work when I was working. But that is because I went to work to do the work and to be able to get on with it and when it was lunchtime I wanted to be left alone, in peace, playing solitaire or reading the newspaper. A dog would have made no difference to that and if it had invited people trying to make conversation I would have felt more stressed and ill at ease.

This is just our take on it.

We have a dog ( pet).. But who has been trained up.
She has no formal recognition and so has to wait for us outside shops etc... However what she does for ds is great.

Without the dog he won't interact with people in the local park... With the dog he does. While people ask about our mut they are looking at the dog. Ds is happy saying hi and talking about her.

When he crosses the road he forgets to stop and wait .. The dog stops.. And waits.. And at a crossing she will not move until she hears the beeps.
( not true road crossing help.. But it's enough to remind him of the things he has to do).

When he's fed up she is there.. Unconditionally

she finds her way through crowded places.. An issue that causes great anxeity for ds.

So to be able to have a fully trained up asd dog would be fantastic for him...
As our pet already does loads :)

I have tried in vain (and I've been down a lot of avenues)trying to get a assistance dog for my 10yr old son who has autism. You can't get them.

I want a friend, a companion for my son who presently never leaves the house and has no one visit. He has no friends.

He's a very loving boy and high functioning but is just so isolated.

I don't think it would single him out.

Total, bollocks
The most iportnat thing IMHO for any disabled person is CHOICE and if there is something, whatever it may be that will help them access. employment or social activity they should be able to CHOOSE if they use it or not.

Some people wouldn't want people to know they ahve ASD, some people are very private & they I guess would choose not to use such a service.
But maybe soem of the fear of people knowing that you ahve an ASD dx is about peoples ignorance & perceptions of ASD.
Only when people are bold enought to admit they ahve ASD will opinions change IYKWIM - a bit of a visous circle.

For my ds2 i'm not sure how a dog would help,HE IS 8 & has LD and cannot read or write, so can't see him being an IT expert, maybe he'll find his "thing" one day - here's hoping!

Dogs are lovely. I grew up with them. I just wouldn't want one to take to work with me.

I have a high powered job? No, I don't. I'm not sure if people think I'm some sort of megacorporation chief exec or not. Alas, not. Though I'm very proud of what our whole team have created together.

I don't agree that a dog would increase bullying, unless there's research to show this is the case with dogs working with autism anywhere else (not from my work with the autism assistance dog charities so far...).

DH and I set up our own small business in the professional sector because neither of could cope with the bullying and panic we experienced when working for other firms. It's very very highly specialised, which means we can cope well with the narrow field of work.

I'm only able to hold this job because of the support of a whole team of people including social worker, advocate, psychologist, support team at work, others at work who are on the autism spectrum and who support me in the same ways as I support them. I'm not at the mild end of the autism spectrum, and I have a wide range of other disabilities.

I also grew up in poverty, - the full Free School Meals and hand-me-down clothes and no heating apart from one open fire thing. all whilst caring for a very ill mother.

According to my social care team, I shouldn't be able to work at all. I just chose to say "P* off" to that suggestion and found ways round every sodding barrier. The idea of my work is to explain how I found those ways round the barrier, and enable as many others as possible to do the same, I think. If dogs could help do that for even 1 in 100 of us, that's 5,000 people in work who wouldn't have been. I think it's worth a bit of research, at least.

Apparently there are assistance dogs for adults with autism in the Netherlands. It seems to work very well. I still think we need those same choices for people here, if they so choose.

Bullet 234.......do you have a disability?

I like dogs but I don't just want "a dog" for my son. I could buy one if it were that simple.

These dogs are gentle, patient and very highly trained. Not JUST a dog!

I do consider managing director of a firm of surveyors/ consultants quite high-powered and it is beyond many people, NT or SN, to create that kind of career for themselves - you've done well for yourself and you should be proud.

If my sister took an autism dog to work, the bullying would massively increase. It would. Like I said, it's not comparable to a dog for someone with epilepsy, or someone blind or deaf, because there is nothing concrete you can say about the benefits of having a dog at work with you really.

I know it's hard for you, because it has worked for you, to accept that it might not be of widespread benefit, but in these financial meltdown times, it seems like a waste of money, tbh.

There is a choice. People can choose to get a dog and pay for it to be trained. It's just not an essential thing for money to be spent on, not when there's not enough respite, help off a person at school/ work, not enough money spent on social workers/ leisure activities.

Again, you have the money to pay for all that autism support you have. In terms of what's available off the council for adults with autism here, it's pretty much nothing, so adults in that position would need all those basics first before the 'extra' of a dog, IMO.

Wendi, bullet is on the autistic spectrum.

Thanks givemesleep.

Hope I didn't offend.

Wendihouse, I'm diagnosed Aspergers. So, yes, I suppose I do. But like others have pointed out, everybody is going to have different experiences. Ds1 (ASD) is scared of dogs. Ds2 (also ASD) ignores them. Myself I like dogs and cats (have one at home) and they offer a great deal of comfort and support, I just would not want one to take to work with me. Assistance or otherwise. Cat or Dog, to clarify.
My parents keep border collies, that are highly trained in a different way, but because they are highly trained they are very good with the lads when we come to visit them and my parents.

And no, you didn't offend.

We have an assistance dog for my profoundly autistic stepson.

She follows him. Calms him. Sits with him when he descends into rage. He walks with her in her jacket, and she helps to keep him from harm.

One of my sons has aspergers. He adores the hound. It has helped him to interact with the world by caring for the wolf and being with her in public (though she is not his, he has benefitted).

LisaD, the dog was allocated before our families merged, but dogs for the disabled seem to have no problem with there being more than one ASD child. Though I imagine they would want to allocate to one child only, as ideally that child should develop an individual bond.

Riven, I used to be terrified of dogs, but the assistance wolf is lovely. She completes our family.

And I forgot to mention.

My stepson is terrified of dogs. All dogs. Except ours. His.

They are fantastically well trained. They build a real bond. Even if, historically, your child is scared of dogs I don't think this rules an assistance dog out.

I would have been sceptical in the past. Very. But now I have direct experience. And I am not sceptical.

A real wolf? I do know under the right circumstances they can live with humans.

The charity called her a Labrador.

But as my AS son would point out, that means a mutated wolf with 99.99% the same DNA....

So I guess the lesson is that it works for some and not for others.

But finances have to focus on the things that work for most.

See, I do think that a pet like a dog or cat can form a wonderful bond. We had our cat for several years before Ds1 was born and so when I came home with him we expected there to be some issues going on that would indicate she was unsettled.
There was (and has been) nothing. Obviously she doesn't know that Ds1 or Ds2 are on the spectrum, but she has always accepted them being there. It's hard to describe, but her nature does seem to help. And because she is so patient it's helped us help the lads with her.
And of course I find her very soothing and helpful for myself, I just don't think of her as a support animal, she's just part of the family.

madsadlibrarian - I understand your point but it seems to be is more about disclosure than my point about acceptance, which obviously disclosure would be a major factor in as I appreciate employers cannot treat every employee as if they have autism just in case they've decided not to be open about it.

givemesleepandsomerevenge - I can see how it's viable in computing but in what way are "music technology" and "painting/ decorating/ plumbing." similarly "solitary businesses"?
Also, support systems for disabled people are essential, not a luxury.
If a dog or indeed anything else is the most appropriate form of this for an individual, it shouldn't just be an afterthought when times are good, and certainly not something which should be considered as last in, first out.

anonandlikeit -
"Total, bollocks
The most iportnat thing IMHO for any disabled person is CHOICE and if there is something, whatever it may be that will help them access. employment or social activity they should be able to CHOOSE if they use it or not."

My thoughts exactly - thank you for standing up for them :)

"support systems for disabled people are essential, not a luxury"

Agreed, Mumi. So let's invest in things that will work for a lot of people, so they get their essential support e.g. support from an actual person, that is essential and leave the cheaper, more individual options like dogs, that people can fund themselves, for people to choose to fund themselves.

I agree with anon - it should be about choice, but that doesn't mean we have to formalise every single thing that works for some people and spend millions of pounds researching and adminning it all!

I'm actually quite at the idea that I wouldn't think that support for disabled people was essential.

And at the idea that I'm somehow not standing up for disabled people.

This illustrates my point almost perfectly: I thanked someone for standing up for my thoughts as an individual person with autism, whereas you seem to have generalised me as one of a number of "disabled people"!

I haven't said that you wouldn't think support for disabled people was essential - our disagreement is on what you would deem "essential".

You also said earlier "I know it's hard for you, because it has worked for you, to accept that it might not be of widespread benefit"
Similarly, because you don't think it would work for your son, I know it's hard for you to accept that it may be of widespread benefit to others - if only it went ahead.

I don't know if you have autism or indeed any other disability but it seems there is a lot more attention being paid to people who know people with autism than those who actually have it.

I don't believe that the decision the OP is referring to is based on the majority of people with autism, but a stereotype.
This means that people with autism are continuing not to be assisted in areas outside that stereotype due to those very stereotypes being reinforced.

What about those for whom a dog would be the best option for their support (chosen over the unpredictable human factor even at the best of financial times due to the nature of autism), but who cannot afford a appropriate dog to train (assistance with the selection of which is presumably where the charity work begins), let alone the training itself?
In one sentence you say it is "cheaper" but in the next you say "that doesn't mean we have to ... spend millions of pounds researching and adminning it all!"
So which is it?