I've noticed more posts recently where people are saying they have received an autism diagnosis but then they add Aspergers in brackets.
It has been more than 12 years since it was dropped as a clinical term so I'm wondering why it seems to be talked about more in these last few weeks.
It was just a passing curiosity.
I think that a problem with a spectrum disorder is the danger of ending up with a one size fits no one situation, I feel I already suffer from this regarding support needs.
I think allowing us to have some level of choice about what, where and how we get support would be really helpful especially in work and education and in some other areas of general life too. To often I think we end up as stray parcels, being passed around because nobody is willing or able to address our needs. Support groups, especially those that are funded by government or local authority need to be much broader in how they help, they need to say what they offer and what they don't clearly and from the outset, they need to rely less on technological answers and not send you a page from google with possible directions to go for help with your particular problem.
It feels like escaping the revolving door of actually getting tested and being shoved at another one that allegedly gets your support needs met, only to find yourself trapped all over again going round in circles, only to be spat out back at the begining still with no help and brised and battered from trying.
I just don't think grouping withing the spectrum will ever work.
I understand where you are coming from, but there is this to consider.
It seems a max of around 5% of the population is autistic so dividing this into smaller and smaller groups will make us less of a force to be considered for support.
It is for this reason I think it best we retain our identity this way.
As for receiving support, it does largely seem that only a tiny percentage get any NHS support as it is and I don't forsee that budget growing at anytime in the next decade at least, so creating splinter groups will have no real difference anyway.
Can you think of any tangible benefits to splitting the groups?
I think you are right.
In my case, I can do a degree, like history where I don't have to have anything to do with maths. On an adjusted Qi test I came out higher than average, but I cannot cope with maths or numbers or tech, with those things I'm quite disabled, but I'm very wordy
Maths seems to be one of those things that people are sort of proud not to understand and don't understand how disabling it is to really not understand it.
Whatever the approach is, it needs to be more nuanced in practice, I can't see who's really served by the current system
This is the difficulty with categorising autism. There is always going to be someone that doesn't quite fit in a category.
This is always the case for spectrum conditions.
You will have some of the traits at different levels of intensity but if you have enough traits strongly enough for it to be disabling for you then you are given the label of autism in the diagnosis.
Remember that the diagnosis is, technically, that you are disabled because of your neurodivergence, so it is a label that should open the door to the support you need in an ideal world.
Our world isn't funded well enough or run well enough to cope however and that leaves us in this weird halfway house when you are diagnosed as disabled and then cut adrift by the health service to sort yourself out on the whole.
Add in the current societal distaste for so many "needy" people suddenly appearing, the costs for just existing being really high and the lack of availability of affordable private support and it is a quite a difficult place to exist.
I would hope we can overcome our differences and pull together to help one another at the very least. This is why I give so much time to answer questions here and do charity work with autists in my city to help them transition from school to the real grown-up world.
Yes I was told when I was diagnosed that in every other way I fit the profile but no language delay is one of the criteria so therefore my diagnosis was ASC. I just don't think grouping withing the spectrum will ever work. There will always be odd ones out and blurred lines etc.
I think best would be, if the knowledge about autism within professionals and general population was higher. But for that are two things needed - time and open minds
I also had developmental delays, so my therapist told me, I'm his opinion it's not asperger.
My cousin was diagnosed Asperger’s too obviously before the medical world tried to distance itself from that name and put everything under one umbrella.
DSM 5 was my diagnosis criteria but I didn't get a level afaik, I can double check - but as no one seems to use it and never been asked, it does seem a little pointless
I got travel insurance yesterday - and ASD was all that it asked when quoting, not DSM level, which added 15% to the premium, not sure why but there you go.
I get what you're saying but where would I fit in to the old way? I didn't meet the criteria for Asperger because I had language delay as a child. But I'm fairly intelligent, manage a job and live alone. This is the difficulty with categorising autism. There is always going to be someone that doesn't quite fit in a category.
I think thats a very wise and erudite post, AoE, although I understand Iains position in his post below that divisions can be unhelpful, I think this could be the difference between diagnosis and how people feel or are made to feel about thier diagnosis. It dosen't help that therre's so much crossover between what's used in America and what's used here, we do online quizzes and diagnostic stuff, some seem to be much looser definitions than others. Obviously a proper diagnosis is needed so as people can be more specific about thier needs, although I also understand why some may wish to self diagnose, they may not be able to afford it, or may not wish to for other reasons, equally valid.
My concern is partly that people who need more support risk being overshadowed because they are less visible. If employed high flying types become the general perception there will be a harder attitude to those needing support
Conversely if the opposite view prevailed, then it would be harder for everyone to get jobs as everyone would be seen as a liability.
I think one of the arguments for putting everyone together was to stop stereotypes. I don't know how well this works in the mind of the average person. But attitudes take time to change and you have to start somewhere
But only certain people seem of interest to the media.
You are probably right. But I struggle with these kinds of mind sets. How can we want there to be less stigma for autism but then want to separate ourselves from others on the spectrum because we see our selves as better. Drives me mad.
I don't know why we can't just diagnose autism spectrum condition and be done with it.
My observations on this are that :
1 - some people don't want to be associated with the low functioning people on the spectrum. It is sort of a stigma thing.
2 - there is an element of snobbery for some. They want to be seen as better than others as they have some trait they think is better - a higher IQ for example.
3 - Some people are naturally competetive and you can see this when some are comparing their scores on tests etc. It is a fairly basic human quality.
4 - some don't understand the scales used in the DSM5 and will come up with some other idea for describing themselves that makes sense to them.
These are some of the contributing factors as far as I see them.
There are differences within the Autism Spectrum Disorder and probably people want to highlight it - which part of ASD they have. There is a big difference between a person, who only does one movement or sound whole day and is unable to do absolutely anything else, and a person, who gets very deep into some topic, even if it’s nothing really useful or productive, but has abilities to learn and function to some extent independently in daily life.
I had periods in my life, when I could pace my room whole day literally and not use toilet or eat or drink. My family stopped me from that. But I could do it half day without any problem. I didn’t even know it was half day passed. I also had periods in my childhood and teens, when I could sit long hours and draw floor plans, create some data, or draw tram line schemes with timetables. I had some difficulties in learning, because the subjects were all too much and I needed more breaks and time to process what I heard and red. My therapist mentioned atypical autism to me.
I think that the distinct names of conditions within the ASD should stay. Maybe the name of Asperger should be changed, for example to Sukhareva’s name. Grunya Sukhareva was a Soviet (born in Ukraine) child psychiatrist and first to actually identify and describe autism. So maybe her name could replace Asperger. But there are many people, who just identify with this diagnosis as it is, because they received it. And it’s widely used for example “Aspie quiz” - comes from Asperger, or Ritvo Autism Asperger diagnostic scale (RAADS- test) that we all here take and get some results. It’s also used in the diagnostic process. So it’s not that easy to remove this name from the use. I think that maybe there should be a clearer division within the ASD. I red, that in Island the Asperger is still being used as an official distinct diagnosis.
I'll be honest. Being autistic and having worked in SEND for about 15 years. I still don't really understand what the old Asperger's diagnosis was about. It's use with diagnosis was sporadic and didn't add up. I don't know why we can't just diagnose autism spectrum condition and be done with it. Support should be given on an individual basis not based on a number they were diagnosed with. Particularly when these diagnoses are being given to children who may change a lot in their life time but the number will never change.
I agree with you there. People still think the spectrum is a straight line and they seem to think you are either at one end or the other of it. It is frustrating to say the least.
I think the levels are area dependent. The original Asperger's diagnosis was an interesting anyway because one criteria was language development. I was assessed before the term was got rid of and at first that is what the assessor suggested but once we talked about delayed speech he changed his mind.
I don't love the levels system. I don't know whether it's needed. I'm aware that there are autistic people who do have far more need than the rest of us and will have coexisting conditions such as learning difficulties and obviously they should get the support that is needed. Do we need to label this with a level though? Can we not just assess on an individual basis whether someone needs support or not? The levels definitely don't account for spiky profiles or the fluctuations we experience depending on the day.
I dislike PIP for this. They have the 2 levels of rate but you still need to be able to prove a significant amount of need to get the lower rate and the lower rate is still quite a lot of money. If they'd just assess the individual and work out what that individual needs they may be able to give an amount of signpost them to the correct services and end up saving a lot of money as not everyone would need that amount. So many more people would be able to manage independent living if this was the case - again saving money that would be spent on housing/care.
There are 2 sets of criteria, DSM-5 American Psychiatric Association) and ICD-11 (World Health Organisation).
The DSM-5 was contributed to by UK people , e.g. Francesca Happe.
The two are quite similar in terms of criteria. DSM-5 has levels, ICD-11 does not. Since support needs vary with circumstance, over time and depending on state (e.g. burnout, stress level) it is not all that informative.
Some here, including my assessor, prefer using DSM-5. But as the NHS don't use the levels they are left out. They are viewed as outdated.
Some may give you a number. But needs are assessed on an individual basis, e.g. you might be 1, but need help for something specific.
