Optimal Outcome

[Lyndalou]

Well, I've been reading a bit more about 'Optical Outcome' or more to the point, the recent report which claims that a small percentage of children who have a diagnosis of ASD go on to lose it some time in their teens or early adult life and become indistinguishable from their typical peers (except for a residual problem with social functioning possibly). I know I 'should' be able to wrap my head around that one. In fact, I suppose I should jump up and down with excitement at the prospect that there are people out there who have all sorts of difficulties in childhood and then somehow, for some unquantifiable, not-quite-sure-how-it-happens kind of way....they just lose it. But only after years of intense intervention....hmmmm! Oh, and some of them have anxiety or depression instead of ASD.

 

Maybe it's just that I reckon I am one of these people who have achieved 'Optimal Outcome'. Mostly, I look normal and if I hide it well, I act normal. Therefore, I must be...normal. Not to worry, I just have chronic mental health problems instead. Officially, I am 'sometimes' autistic. I am only autistic during periods of stress or when I am in un ASD-friendly environments. Anyone care to explain to me how I KNOW I'm in an ASD-friendly environment? Or how does that work when I'm pretty much always stressed? I asked a therapist 'So, am I autistic 6 months out of the year and am I consistently autistic for those 6 months or am I autistic one day but not the next or autistic in the morning but not in the afternoon?'.

 

I guess this is 'Optimal Outcome' but who knows?

[watergirl]

I think some of us do learn to cope fairly well as we grow up......I'm one of them I think....a lot more able to cope than when I was young in many ways. However, although I appear "normal" to most people on a superficial level, people who know me well do realise I'm a bit "odd" ....but if I am suddenly confronted with a stressful situation, then it becomes obvious to people around me that something is not quite right. (she says, having just come back from ASDA having made loud comments about their music and stood with fingers in ears while they do the bing-bong announcements )

I don't think we "outgrow" it.....just a case of either finding coping mechanisms for most situations, or realising that acting "odd" has it's own problems....draws unwanted attention mainly.....so we "bottle" it up. I do this, and then sometimes it gets released on loved ones later, which is very unfair....my Mum is like this too.........or maybe some of us find other ways of de-stressing later....alcohol, for example.

It reminds me a bit of the programme on tv a while ago regarding Tourette's Syndrome.......it became apparent that some people can control their tics for some time, but often need to release the tension later, probably at home. I suffer some tics, but they only really release badly if I drink alcohol.....other than that they are hardly noticable, and I think this is the key....we can hide a lot if we want to, but not necessarily when stressed.....so I don't think you can put a time-table/date on when you are ASD......it is more of a triggered event. It may not be like this for everyone, but I think it sums up how I am fairly well.

[smileyK]

I think this outcome theory basis depends on several factors of age when diagnosed , what type of personality you have ( if outgoing shy determined motivated) and also family /friends support around you also if diagnosed later on in your life you will have for sure developed hidden coping methods /tips already throughout situations to help manage better I sometimes feel more asperger's than other day also depends on how mood is as then more 'vulnerable' where AS is more noticable obvious! XKLX

[smileyK]

I think this outcome theory basis depends on several factors of age when diagnosed , what type of personality you have ( if outgoing shy determined motivated) and also family /friends support around you also if diagnosed later on in your life you will have for sure developed hidden coping methods /tips already throughout situations to help manage better I sometimes feel more asperger's than other day also depends on how mood is as then more 'vulnerable' where AS is more noticable obvious! XKLX

[Lyndalou]

I read the ASAN statement about the recent Fein Report - www.autisticadvocacy.org. In it, they discuss the narrow parameters within which the researchers judged the study participants to be 'cured' of autism. Firstly, I believe some of the participants were judged to have only 'slight' social impairment to start with by the researchers. How did they decide upon what was 'slight' social impairment? Was it that they chose children who were actively seeking out social situations as opposed to children who kept themselves separate from other children? Doubtless the study would not have included children with the classic 'in their own world' symptomology. I would warrant a guess that those children were also therefore more motivated to learn appropriate social skills from a young age and that there was a certain amount of 'copying' behaviour in evidence also from the early years.

 

ASAN are very concerned about this report and I personally feel that it shows how little the scientific community really know about autism and how we learn and grow. One of the concerns which ASAN expresses is that there was no mention of differences in executive functioning, distress or mental health concerns, repetitive or restricted behaviours or interests within the autistics studied. The researchers based their decision that these 'former' autistics had lost their diagnosis based on the fact that they had made friends and 'appeared' to function within normal limits - much the same reason I was told that I could have been eligible for a diagnosis of ASD 10 years ago but not now. In my report there was no mention of my ongoing difficulties with friendships even though I have friends. There was also no mention of anxiety, depression and paranoia.

 

On a personal level, I think this report reinforces the gulf between what 'true' knowledge of what autism is and what it isn't , who autistics are and what autistics can achieve and it makes me feel very sad . It gives hope of a 'cure' when the reality is that living with ASD can be very difficult every day even while at the same time we can achieve great things and are just as important in a different way to everone else....sorry - little bit of a soapbox moment .

[atlantis]

@ Lyndalou very well put, I completely agree! When I first read about the report in the newspaper I was really concerned about the effect it would have on public awareness of autism- particularly of high-functioning types as in personal experience it's often difficult to be taken seriously as it is! I think the perception of autism as an 'illness' that can be 'cured' is a potentially dangerous one, Even if it were possible to completely remove all autistic traits to make a person 'normal', there's the question of whether it really would be as straightforward as treating an 'illness', or whether it would be a complete reversal/reassignment of a personality.

 

And how far would it go, beyond autism? Would they try to change any remotely 'abnormal' traits in anybody, to make them fit better with their definition of normal?

 

Scary stuff :/

'

[smileyK]

I think it "too easy" to look at every ASD click fingers and for it to disappear - cure but I believe too many various forms of ASD for there to be "magic cure" to exist and come to life! I feel shocked and surprised that research and article come to the cure conclusion that be a pure dream for services of waiting lists assessments endless like CAMHS! But like many conditions is their such existence as 'true cure' if there was who would take it up! I think research and articles written like to grab at 'anything available and accessible' that people out there may grow attached to and may start actually want to hope then believe! I also believe it convient for these articles to be published ( I think close to andrew wakefield's report) which so weird ,wacky and totally wrong (out there) these researchers have no founded reality of 'our lives' what it truly involves and what stress anxiety it causes and articles such as this does not really help anyone or anything make it better just a debate once again and for what reason! We've had no choice but to try overcome challenges that ASD brings to our lives constantly (even when we didn't know it existed as a term - a condition in it's own term/right!) XKLX

[smileyK]

* I totally agree it shaky battle ground and board game to get into as it boils down to is'outside people' who think they "know us" - our world we may reduce actual ASD level to outside world but our struggle within is another issue/matter! We 'hide' how it gets 'us' well as we've learn't to 'get on' not complain with difficulties just adapt and grown further within society's community! But don't mean we've been suddenly and rapidly cured overnight makes me feel angry and defensive towards my personal experiences I've come across and faced in my life looks like meaningless and pointless is how 'outside' see it as!

[Lyndalou]

* I totally agree it shaky battle ground and board game to get into as it boils down to is'outside people' who think they "know us" - our world we may reduce actual ASD level to outside world but our struggle within is another issue/matter! We 'hide' how it gets 'us' well as we've learn't to 'get on' not complain with difficulties just adapt and grown further within society's community! But don't mean we've been suddenly and rapidly cured overnight makes me feel angry and defensive towards my personal experiences I've come across and faced in my life looks like meaningless and pointless is how 'outside' see it as!

 

Don't worry about this with regards to yourself Smiley. It hasn't been long since your difficulties were recognised and you received your diagnosis so in terms of 'Optimal Outcome' (which is essentially 'losing' your diagnosis whether you had it in the first place or not!) this report is not referring to you or how you 'present' as such. In the eyes of the professionals your diagnosis is valid as are the problems associated with AS.

 

[smileyK]

@ lynda lou - how does article not apply to me confused of what meaning is of this outcome theory now then?! Must have misread in between the lines! (Which isn't hard task for me to do!) XKLX