Autism Facebook groups - Parents v Adults

What's even worse are the professionals that fail to recognise ASC in children and they get misdiagnosed or missed-diagnosed (as with my eldest daughter).  Maybe that's partly the blinkered attitude as well, clinical, professional or Joe Public, they are all NTs in attitude.  You can't grow out of something they won't admit you ever had.

I think there's more to it than embarrassment. Two things particularly:

We are somehow responsible for our continued difficulty - like we rejected the efforts of our parents to change, or have some other "defect" that prevented us benefitting from the good intent (or maybe we were the kids that stayed awake and saw Santa).

Secondly NT's don't like to do anything that's perceived as embarrassing. Its like not crying in public. Because NTs (I use this carefully to mean people not affected by being on the spectrum) seek social approval, there are things you just don't do as that risks social disapproval.

People on the spectrum have difficulty engaging socially, so we don't enjoy the security of social acceptance. Nor can we readily recognise what is acceptable and what obtains disapproval unless it is explained to us sympathetically and helpfully. Otherwise the notion of acceptability is hard to grasp.

So when we act consequentially of factors in autistic make-up and fail to restrain ourselves, or we make out we are on the spectrum, we are showing a lack of self respect and dignity - something an NT just wouldn't do. We also appear wilful and insensitive. This may underlie the reactions of health workers. We aren't trying hard enough to control our weaknesses.

Trouble is for the human race to survive, increasing progress and readjustment means that this play safe social acceptance taboo is self-destructive.

It is actually important that more people risk social approval in order to achieve change.

Parents with children on the spectrum hope their children will recover but also that they wont "let the side down" show weakness, risk social disapproval. I suspect it is that more than the welfare of their children (however cruel that sounds) which is uppermost in their minds.

People who don't hold in their weaknesses and don't conform socially are wifull and bad.

Personally I take the view that this blinkered "I'm alright jack" perspective that comes from many NTs isn't just hard on people on the spectrum, it is detrimental to the future of the human race.

Could it be that we are an embarrassment?

Could it be that NT parents of ASC children are pouring their all into assistance, support and interventions for their children in the vain hope that it will make little Johnny or little Jessie grow out of it?  Dealing with us, is like facing the truth that they don't want to face?  They might take it as a failure of some sort if their child grows up still having signs of the condition.

Out of sight out of mind.

The whole issue of parents' groups is a fascinating phenomena.

I think that the very difficult nature perceived in children growing up on the spectrum has given rise to a special case approach to disability.

You are more likely to find a broader mix of parent and affected person dialogue for deaf/hard of hearing, blind/partially sighted, mobility groups or with less visible disabilities like dyslexia. There, particularly with the last, its about the individual with dyslexia!

Some parents' groups do tend towards a state of "autism by proxy", and I've encountered several parents' groups in the past where it is exclusively parents, and the children, if dragged along to meetings, are just incidental.

However the other side of the problem is that individuals on the spectrum, except at the more manageable end, are not well placed to speak up for themselves (OK just bear with me on the specifics of this - I know some can) but more importantly are not economically placed to be able to put money into campaigning. There are a lot of successful people with often severe dyslexia who can contribute funding and influence campaigns.

I've recently moved to another part of the country, but where I was previously I was a member of a parents group. I was only able to do this paying as a professional at professional rates and full whack on top for events. There was no membership category for people on the spectrum, who were in any case invisible unless accompanying parents, where they often appeared more like mascots, and adults on the spectrum were rarely brought along. Occasionally if I let slip to members at social gatherings that I had aspergers, I got shunned or dirty looks.

This state of affairs must be pretty unique for a disability, as other postings have confirmed, its as if the people with the condition don't matter. Yet parents in such groups can be fiercely defensive about the rights and provisions they seek for their children. It is clearly well-intentioned, just somehow or other, these people don't seem to see that there's an anomally because the people WITH autism don't appear to count in their own right.

The trouble is this is going to go on for years. his is because adults cannot change it. Many have limited independent finance because of the difficulty finding emplyment. So we have no way of changing the predominance of the "parent" power lobby. We have to be grateful for what they can do and have done to get autism more visible. But I don't think "parent power" is going to give way to the "those of us with" group.

Not least various "cures" and the efforts of parents' groups on behalf of their autistic children have established the myth that you "grow out of it". And politicians are still influenced by the parents' group lobbies so they still believe it, despite NAS campaigns to increase the profile of adults. It also explains why GPs and other health workers are still sceptical about adults.

So I think there actually has to be a major rethink before there will be any recognition of the rights of people ion the spectrum to be heard. It is the singular peculiarity of "parents groups" in autism that has given rise to this anomally. It wont change gradually except over many years of wrecked lives.

There has to be, in effect a "revolution" in the way we think about autism to break free of this "parents orientated" perspective.

Perhaps it's because the NTs expect empathy and sugar-coated words and are less likely to get that from an Aspie.  We tend to say it how it is and that doesn't always go down well.

IntenseWorld said:

...just realised what it is and why they do that.  It's a human behaviour to be part of the gang, the tribe, the group.  Anyone different is excluded and ostracised as they threaten the group.  With NTs, because they are NT and you are Aspie/autie you (we) don't fit (their children "don't count" because they are their children) and with other Aspies it will be different reasons such as severe versions of the traits that AS brings being the overriding factor - coupled with individual personality traits, perhaps not so much the tribal aspect but skewed values.

True. I've noticed it's worse with the ASD / NT divide than other groups.

I post on other disability groups where there's a mixture of parents and people with the disability and it's nowhere near as bad. It usually goes parent asks for advice and is given advice from people with the disability, which the parent is happy with. Everyone seems to be accepting of each other.

IntenseWorld said:

...just realised what it is and why they do that.  It's a human behaviour to be part of the gang, the tribe, the group.  Anyone different is excluded and ostracised as they threaten the group.  With NTs, because they are NT and you are Aspie/autie you (we) don't fit (their children "don't count" because they are their children) and with other Aspies it will be different reasons such as severe versions of the traits that AS brings being the overriding factor - coupled with individual personality traits, perhaps not so much the tribal aspect but skewed values.

Yup, from what little I 'understand' of the way the NT mind works, you've pretty much got it spot on.

Though, I put 'understand' in inverted commas like that, 'cos I find it completely baffling.

Urspecial good post on the clarity of the NAS assistance to adults with Autism.  Are the NAS aware of this ? I was being to think it was just my autism mind ? Your post has given me a bit of peace of mind. Thank you.

Facebook is too open things that affect us like with autism in our lives,ithink its best to stick with places like these where, things about autism are best discussed.

IntenseWorld said:

[quote]I wasn't kicked off a website - I just decided  to walk away because I felt, like Stranger said, that there was "a divide between parents whose children are on the spectrum and adults on the spectrum".  That particular website was set up by parents who had children on the spectrum at a  time when it was believed that it was a childhood problem and not an adult one and I came to realise that they and most of the other posters there were not really interested in,  or sometimes actually hostile to, those with adult diagnoses.[/quote]

Several of us stopped posting at the same time and for the same reason.

That's really sad, because they are losing a valuable opportunity to learn what the future holds for their children.  How short-sighted is that.  They won't stay children for ever.  Surely any decent parent wants to get an inkling of what issues their child will face as an adult as that will impact on them as parents, as an adult that child is likely to need extended support from their parents, perhaps for life.  Sadly, if the parents are NT they are going to be prone to all the difficult attitudes and behaviours that Aspies face in society generally.  Although that brings me full circle back to the fact that I was booted off an Aspie website and the behaviour of some Aspies leaves as much to be desired as some NTs.

This is what bothered me. I thought I was helping them by being there. And it was nice (while it lasted) to get feedback from NT parents.

It seemed as though I couldn't ask questions without either being ignored or being told off. Yet, they could pretty much ask and talk about what they wanted. Because of trolling, the admin had to approve threads (not posts) and it seemed to turn into a general discussion place. I post on a few other Autism Facebook groups - one aimed at adults on the spectrum (I think there's the odd NT parent of an Autistic adult there) and another aimed at both and can say that I've never had a problem at all with either group.

The worrying thing is, that if parents of ASC children can be like that to people with the same condition as their child it makes you question how well they understand their own children and how difficult they could be making their existence.

I got the impression they didn't really understand their children. They were pretty much allowed to get away with anything because of their Autism too and the parents would just make excuses instead of helping their children. One of them knew her 14 year old smoked and drank alcohol and fell in with a bad crowd, yet, she'd do nothing to help him.

...just realised what it is and why they do that.  It's a human behaviour to be part of the gang, the tribe, the group.  Anyone different is excluded and ostracised as they threaten the group.  With NTs, because they are NT and you are Aspie/autie you (we) don't fit (their children "don't count" because they are their children) and with other Aspies it will be different reasons such as severe versions of the traits that AS brings being the overriding factor - coupled with individual personality traits, perhaps not so much the tribal aspect but skewed values.

NAS11521 said:

I wasn't kicked off a website - I just decided  to walk away because I felt, like Stranger said, that there was "a divide between parents whose children are on the spectrum and adults on the spectrum".  That particular website was set up by parents who had children on the spectrum at a  time when it was believed that it was a childhood problem and not an adult one and I came to realise that they and most of the other posters there were not really interested in,  or sometimes actually hostile to, those with adult diagnoses.

Several of us stopped posting at the same time and for the same reason.

That's really sad, because they are losing a valuable opportunity to learn what the future holds for their children.  How short-sighted is that.  They won't stay children for ever.  Surely any decent parent wants to get an inkling of what issues their child will face as an adult as that will impact on them as parents, as an adult that child is likely to need extended support from their parents, perhaps for life.  Sadly, if the parents are NT they are going to be prone to all the difficult attitudes and behaviours that Aspies face in society generally.  Although that brings me full circle back to the fact that I was booted off an Aspie website and the behaviour of some Aspies leaves as much to be desired as some NTs.

Like you, TrueColors, I was on the point of leaving the website that banned me anyway, I had been in discussion about it with another member by PM and wasn't bothered about the website itself as there are plenty more fish in the sea as they say and my life doesn't revolve around a website.  I was bothered by the fact that it was my mode of communication with an Aspie friend, although we since found an alternative method of communication anyway.

It's just ridiculous how some people behave online and how they feel it's fine to take out all their petty issues on people.  Well OP, don't worry about it.

The worrying thing is, that if parents of ASC children can be like that to people with the same condition as their child it makes you question how well they understand their own children and how difficult they could be making their existence.

urspecial said:

I also tend to agree a lot with IntenseWorld's views but wanted to know if it has been proven like in research etc that the autism not being diagnosed etc has in fact lead to the co-morbid mental health conditions. As I have them too, I do know we're more predisposed or whatever, but would like to see if there has been anything to look into this much further.

I can help you out there:

http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome

http://archive.org/details/LATEDIAGNOSISSURVEYV7

http://www.sacramentopsychology.com/index.php/articleslayout/54-aspergers-syndrome/90-why-is-it-important-to-identify-aspergers-syndrome-in-adults.html

There's probably more out there.  I don't think a lot of research touches the clinicians though.  They could probably argue they are too busy, but they don't appear to keep up-to-date with research or it doesn't filter down to them (a senior clinician at CAMHS poo-poohed me when I said that schizophrenia [along with bipolar, ADHD and severe depression] has a close genetic link with autism which is an established fact the research of which has been given publicity recently).  I think this is why there is a pervasive attitude of adults don't need a diagnosis, are they kidding!

If that is their attitude then I know how elderly people feel when they are treated as second class citizens that have outlived their usefulness to society and left on trolleys in the hospital corridors for hours on end.

I was talking to a friend of mine a while back who is an adult on the spectrum. He said that NAS tend to help parents and not those of us with Autism.

Hi Stranger,

I've not really experianced what unfortunatly had to go through but have had another user say things about me.

I do understand your and other's fustrations with these forums and to NAS.

I think because NAS was founded by parents like Lorna Wing (not saying this is incorrect or they haven't done a good job) that it does get us adults pushed away.

Because I'm also a NAS Ambassador and fighting for adult services, Autism Act etc I kind of see things that NAS have been trying to do for adults like the recent campagin but I do TOTALLY agree that things do seem one-sided towards parents. This is defo needs to be ressolved.

In the meantime, at least we have this place to meet like minded people.

I also tend to agree a lot with IntenseWorld's views but wanted to know if it has been proven like in research etc that the autism not being diagnosed etc has in fact lead to the co-morbid mental health conditions. As I have them too, I do know we're more predisposed or whatever, but would like to see if there has been anything to look into this much further.

Bytheway, I am also upset at NAS but I just feel at least we have something than absolutly nothing, even if that something is utterly rubbish at times.

Just a general reminder to please keep it civil. We'd prefer it if what happens on other platforms doesn't negatively impact what we have here. 

Neurological condition.  "Mental" implies mental ill health - although not to say many of us don't have those as co-morbids too.  The co-morbid MH issues often arise as a result of trying to fit in with society and the difficulties we face in an NT world.

Facebook is as informal as it gets, like in jobs for example, I wouldn't tell a prospective employer that I have autism and therefore I will expect to be treated like an 'NT'. I wouldn't take online things as seriously as in the real world however it is easier to voice your opinion in words rather than speech.

Maybe going off-topic - haven't said this yet but I use facebook from time to time and I haven't joined any groups, I get the feeling that only my parents know I have autism and the rest of the family and friends on facebook assume I am just like them, whether they are in denial or have their own burdens to deal with in everyday life (I am the only one in the family both mum and dad's sides to have a mental condition).

That is what annoys me in the autism community internet forums, it is like some middle class ladies tea and cake forum raising money for africa, without being actually in africa or knowing africa. Then the person in africa starts talking about africa, and everyone starts looking at the africian person with distaste.

For me,, I thought(rigid expectations) I suppose, that I would be in centre circle within the autism community with other autistic peers, with the experts, parents and NT's on the perpherical giving us respect and not being the lead in the autistic world.

D'oh, turned out the opposite,, so you feel more rejected, sidelined, mutated and confused.

I am glad I can at least moan a bit on here and with some likeminded people who understand, but the reality it is not a real autistic forum, nor the facebook one that you found.

I have found most autistic people to have a honesty and an intellect which is refreshing, most Nts can't take this, they experience directness as hostility and competition in lieu of objective solution thinking.

I think a lot of there autistic forums, including the NAS forum is acting as an autistic support parent group forum not as an autistic persons forum, this clashes, there is no middle ground understanding, due to social experiences are different. Although Intense and some others can see bothsides of the coin.

That begs the question is the NAS an autistic support parent group forum or an autistic persons forum. ?

I see four camps of Autism understanding: ,  NT's ~ don't understand autism.. Nt's parents of autistic people ~ understand autism to a degree.. Autistic People ~ get it ! Autistic Parents ~ Really get it !

What I have noticed, is that you have now suffered something similar to what I went through on another forum.  Doesn't feel nice does it?  People ganging up and being unfairly ejected for no reason than it seems they have it in for you. Touché.