Adults with AS -

[nan]

I was just wondering - it seems that AS and other related conditions are being diagnosed more and more now. I can't recall coming across it when I was growing up. Presumably there must be a number of adults with the same; do they still have the same hurdles as the youngsters now or have they learnt to cope or cover up such that the problems are not apparent? When does being 'quirky' or slightly different become autism? I think my daughter and I are concerned about 'labels' - sorry about all the daft questions, and hope I haven't offended anyone! x

[Tally]

Hi nan,

 

Asperger's was not known about before 1981 and only became an official diagnosis in 1994.

 

I was born in 1981 and diagnosed with AS last year.

 

As a child, the possibility of autism was brought up my some of my teachers but never pursued my by parents. It is likely I would not have been diagnosed with autism at that time anyway, because I do not meet the stereotypes. But it's possible that a few people who meet the diagnostic criteria for AS would have been diagnosed autistic.

 

Most people who reach adulthood without a diagnosis do develop certain coping mechanisms to hide their differences, which means they are not so obviously autistic. They are not always good coping mechanisms though, and a good understanding of the issues can help you to develop more productive ways of coping.

 

Many people with Asperger's are probably seen as mentally ill. They may well have mental illnesses alongside the AS as well, but the treatments are not always successful without a good understanding of what is going on.

[baddad]

Hi nan - When does being 'quirky' become autism? A HUGE question there, and one that is likely to lead to some very polarised debate...

Personally I think autism - particularly at the H/F and Aspergers ends of the spectrum, is reaching 'critical mass' in terms of casual and 'home' diagnosis. We have seen the dangers inherent in that with other conditions like ADHD/Dyslexia - where the boundaries have become so blurred and the 'criteria' leading to diagnosis bent so casually that those genuinely suffering the massive effects of these conditions find their needs being completely undermined. The public perception of ADHD, in the main, is that it's a 'non-condition', and a handy excuse for bad parenting or a 'get out of jail free' card for problem kids. Private diagnosis has fueled that perception - and while i am not knocking private diagnosis in general terms I have absolutely no doubt that a determined parent with a few hundred quid can buy a diagnosis of ADHD that is not justified...

I think 'Aspergers' has reached that point, and I think diagnosis like 'ASD traits' muddy the waters even further.

 

I would ask anyone responding to this post to understand that I am in no way commenting on anyone's personal situation/experiences on the forum. Previous expeirience has shown that that rarely stops people from taking things personally, but if I start by stating that at the outset at least my intentions are clear.

 

[Flora]

I would ask anyone responding to this post to understand that I am in no way commenting on anyone's personal situation/experiences on the forum. Previous expeirience has shown that that rarely stops people from taking things personally, but if I start by stating that at the outset at least my intentions are clear

 

now that should be in sub text as a disclaimer at the foot of all your posts

 

 

 

[NobbyNobbs]

i think it might be a bit of both.

 

i was diagnosed last year (at 22), and before that my parents had never considered that there was anything 'wrong' with me except i just couldn't do things everyone else found easy. i was expected to do them anyway because thats what people should do, so we found ways. i was dragged screaming out of the house when i didn't want to go, literally forced to eat foods i couldn't stand the feel of (that one i dont agree with!) and was punished if i wasn't polite to someone. because of this i have learned ways round these things and i can cope okay (as long as someone tells me what i'm meant to be doing - i can't organize and entertain myself). i would imagine this is similar to adults who would have been diagnosed with AS if the condition had existed before.

 

however i do often hear people using AS as an excuse to not try to improve a behaviour or problem. kids with AS can learn what to say to someone, even if its very much a routine thing (hello, i'm okay, how are you?) and they can learn to do more acceptable things to deal with sensory overload than scream and break things. i'll probably get shouted down on that but thats the way i see it (i have AS and we've fostered a very traumatized AS kid)

 

i also agree with baddad that things like autistic traits do no favours to anyone. everyone has quirks that fit with the autistic spectrum. the point of diagnosis is that you have a large number of these traits, not just a few.

 

ive also taught kids with ADHD that desperately want to do work, but can't sit still and concentrate to do it (what i would consider real ADHD), and i've taught kids diagnosed with ADHD who seem to just play about but can behave and concentrate when they want to

[nan]

It is very interesting to read the messages on here and it is early days yet for my grandson. Why is the whole world so desperate to pin labels on people who don't fit into the boundaries of what is seemingly normal? It seems the majority of people with supposed autistic traits go on to lead fulfilling lives even if they do have some problems along the way. Don't all children have problems of one type or another? x

[bid]

Now, maybe I'm just taking things too literally, or maybe it's difficult for me to understand but why do people who don't have a formal dx say 'I have AS'. When I was waiting for my assessment I said I thought I might have AS.

 

For me, this 'home dx' without qualification can give a skewed picture of the true numbers of people with AS??

 

Bid

Edited November 13, 2008 by bid

[cmuir]

Private diagnosis has fueled that perception - and while i am not knocking private diagnosis in general terms I have absolutely no doubt that a determined parent with a few hundred quid can buy a diagnosis of ADHD that is not justified...

 

 

 

Hi

 

Hope I've not hijacked this thread, but just wanted to pickup on a point that Baddad raised. A very interesting one. I personally didn't venture down the private route because I was aware that private diagnoses hold very little weight with some authorities, particularly when it comes to education, etc. I agree that it may well be possible for a determined parent with money to buy a diagnosis and I wonder if this could be a reason for private diagnoses holding little weight? I must also add that I can fully appreciate why some parents seek private diagnoses and that's because it can be an incredibly long and drawn out process. Budgets come into it, resources, staffing, etc. In addition, multi-agencies tend to be involved as diagnosing an ASD in some individuals can be very difficult, particular if that person doesn't tick every box or isn't 'classic'. It's important that people are given the correct diagnosis and if in doubt, professionals tend to be very reluctant to give labels.

 

I think there are several reasons why ASDs are being diagnosed more and more. Main one being that I think more professionals as well as individuals have become more aware of what autism (and ASDs) are.

 

My uncle is now 42 and was diagnosed 20 years ago with Tourettes. At that time, not much was known about it and he was treated badly by some local individuals.

 

Professionals who diagnosed my son appear to be of the opinion that my husband may have Aspergers (he remains undiagnosed). Although he himself has said that he believes this may be the case, he's got by 40 years without assistance and so feels he's managed perfectly well without a label. Very personal decision I guess.

 

Regards

 

Caroline.

[Mumble]

Hi nan - When does being 'quirky' become autism? A HUGE question there, and one that is likely to lead to some very polarised debate...

Personally I think autism - particularly at the H/F and Aspergers ends of the spectrum, is reaching 'critical mass' in terms of casual and 'home' diagnosis. We have seen the dangers inherent in that with other conditions like ADHD/Dyslexia - where the boundaries have become so blurred and the 'criteria' leading to diagnosis bent so casually that those genuinely suffering the massive effects of these conditions find their needs being completely undermined. The public perception of ADHD, in the main, is that it's a 'non-condition', and a handy excuse for bad parenting or a 'get out of jail free' card for problem kids. Private diagnosis has fueled that perception - and while i am not knocking private diagnosis in general terms I have absolutely no doubt that a determined parent with a few hundred quid can buy a diagnosis of ADHD that is not justified...

I think 'Aspergers' has reached that point, and I think diagnosis like 'ASD traits' muddy the waters even further.

*Nods vigorously* I think people here know my options on AS/ASD 'traits' and self-diagnosis. Enough said.

 

To return to part of the original question, I think there's also an element of society changing in its expectations, ways we do things and in what is allowed/considered normal. With mass technology communication is central to most people's lives and we live in an ever-changing, fast-paced, often noisy/cluttered world - in general, elements of that are less likely to suit an autistic individual and as such their behaviours may be more likely to stand out than they would say 30/40 years ago when there was less instant knowing what everyone's doing and keeping up with trends, kids were kids more than today (and some of the toys/activities probably suited some ASD children better than what is considered normal to play with today), I think there was more routine (not saying that the basis for this was good) so issues that may have arisen without routine didn't arise, etc. I know of some dx'ed AS kids who are considered quite old-fashioned in what they like to wear, how they like to wear it, what they like to spend their time doing - had these children (and I'm not talking about all AS children) been born 30 years ago, their preferences may have suited the time better and they would not have been dx'ed.

 

At the more severe end of the spectrum, in the past, these children are likely to have been institutionalised and so again ASDs were not known to the public.

 

Don't all children have problems of one type or another? x

Yes, but...

 

An ASD individual has their dx because these 'problems' are outside of the realm/severity of the 'problems' experienced normally and have an immense impact on their daily functioning. So yes, all children have different character traits (not ASD 'traits') that may or may not present as a problem in particular environments/situations, but it it when the whole picture is seen and the substantial effect on daily functioning looked at that a dx is considered.

 

[lbj]

I'm a bit divided on this, I think we are already heading into popular (rather than accurate) diagnosis territory. My little boy (3) was diagnosed this week and I was in favour of it (on balance) because a label is generally the best way to get the most help. His communication difficulties at the moment are profound however, although he has other spectrum-y behaviours outside of the core language problems,on the whole he is very "into" people, his (what I think is called) self-care is adequate, he is relaxed and adaptable and he has no significant behavioural issues. I suspect that with no more than speech therapy he would probably be getting by just fine by the age of say 7. On the other hand my half-brother has no diagnosis at the moment but I'm sure he does have Aspergers, I'd suspected this previously then once my son came under scrutiny other people started saying it and he is now trying to get assessed. He muddled through primary school (with good academic performance) but as he turned teen he went into a downward spiral, was given various diagnoses (all varieties of psychosis), was put on buckets of drugs until his liver started to malfunction earlier this year and so the drugs were stopped and (voila, "mysteriously") there was little change in his symptoms/functioning. I've read that this can be a fairly common pattern with undiagnosed Asperger teens. So I guess there is case for over rather than under diagnosis and not all undiagnosed HFAs will just turn out fine. 'Course, not all NTs just turn out fine either! Maybe I'll just stay on the fence on this

 

janine

[cmuir]

Hi

 

Meant to add in my previous reply that I've heard the phrase 'oh, we all have autistic traits'. I think it's true to say that we all have our 'funny little ways' or idiosyncrasies, however, there's clearly a cut off point when it becomes noticeable or isn't quite the norm or is extreme even. That's where the diagnostic criteria, ADOS, various assessments and the like come into play in an attempt to ascertain whether an individual has 'funny little ways' or whether it's an ASD.

 

C.

[nan]

On reflection I can see both sides - the benefits of the professional diagnosis, with 'label' and the alternative of trying to obtain extra help as needed if the problems don't turn out to be too great. My grandson is only 4 - so early days yet. In fact my daughter is a youth worker, and works with 15-18 year olds; she specialises in mental health problems - I think because of the nature of her work she is nervous of a professional diagnosis for fear that it might be detrimental, and once out in the open there is no going back x

[Karen A]

Hi nan - When does being 'quirky' become autism? A HUGE question there, and one that is likely to lead to some very polarised debate...

Personally I think autism - particularly at the H/F and Aspergers ends of the spectrum, is reaching 'critical mass' in terms of casual and 'home' diagnosis. We have seen the dangers inherent in that with other conditions like ADHD/Dyslexia - where the boundaries have become so blurred and the 'criteria' leading to diagnosis bent so casually that those genuinely suffering the massive effects of these conditions find their needs being completely undermined. The public perception of ADHD, in the main, is that it's a 'non-condition', and a handy excuse for bad parenting or a 'get out of jail free' card for problem kids. Private diagnosis has fueled that perception - and while i am not knocking private diagnosis in general terms I have absolutely no doubt that a determined parent with a few hundred quid can buy a diagnosis of ADHD that is not justified...

I think 'Aspergers' has reached that point, and I think diagnosis like 'ASD traits' muddy the waters even further.

 

I would ask anyone responding to this post to understand that I am in no way commenting on anyone's personal situation/experiences on the forum. Previous expeirience has shown that that rarely stops people from taking things personally, but if I start by stating that at the outset at least my intentions are clear.

 

 

Hi BD.I do wonder if one of the big issues is not so much the fact that parents are increasingly attempting to obtain a private diagnosis it is why parents have to take that route.

Perhaps if appropriate support was provided in schools at an earlier stage parents would then not feel the need to fight to try to obtain a Diagnosis.

On a different but related issue I think.I have watched with interest the debate about patients having to pay for drugs for cancer treatment and whether they should have to then pay for other care...as has been widely reported in the media.

I found it really interesting that cancer charities are so keen to advocate for patients and say that there should not be inequalities based on the ability to pay.

Many people here pay for various therapies and for assessment for a Dx.Similarly many people pay for therapy for mental health conditions.....I have not come across any coverage saying how unjust that is.

I pay for private psychotherpay because it is not available on the NHS in my area....I now also recieve support from CAMHS in support of Ben's work.As far as I can see that is no different to the situation regarding medication and cancer patients.....but I have not come across coverage of my situation.

Cancer charities appear to be able to support their clients in the choices that they make and to advocate for people so that all get a fairer deal by challenging inequalities....rather than questioning the choices that individuals make.They also support those with concerns about having cancer......they do not make value judgements about how much cancer a person has for it to be considered a problem.

Experience will show that I am not usually one to take things personally....but I do disagree.Karen.

Edited November 13, 2008 by Karen A

[NobbyNobbs]

another thing i remember from an autism course i attended was that a lot of professionals won't give a full diangosis to young children as ASDs are paremanent, and theres just not enough evidence that things wont get better before language and social understanding have finished their initial development. they're now in the situation where HFA is being 'downgraded' to AS in some cases when development improves (leading to the misconception that you can be cured of an ASD) there's no rush for your grandson to have a diagnosis, but if he has problems it will probably be *marginally* easier to access any services he needs with a dx.