Melanie Sykes have just been diagnosed with autism

There are so many problems and erroneous implicit assumptions in your posts on this thread that I do not know where to start, and I'm not sure there is even much point in forensically going through these to highlight them to you.

Overarching point is that if - as you profess - your motives are benign and you are primarily interested in the science around this area, and subsequently wish to have a debate about diagnostic criteria and issues and ethics around this, I would ask if you really think this is the best place to do that. I would suggest you would have a more productive discussion - and cause less pain to people on this forum - by engaging with professionals that draw up and apply diagnostic criteria. You have met one, the person that diagnosed your child, so perhaps re-engage with them? I, and clearly many other people here, find your engagement on this thread unhelpful and in fact harmful. I kindly request that you desist.

I do understand where you are coming from, I really do. You said about polar opposites - I think that is a fact of autism that people can be polar opposites but sitll come under the same umbrella. I suppose that's hard to get one's head around really (this is not directed at you - as I type it I am thinking about one of the learners are our centre who is on the spectrum and it's far more outwardly obvious and he has far more needs than I ever would - I cannot relate to him. That's because we are two totally different people but we can both be autistic).

One person's difficulty is one person's difficulty.

and that is that one must have significant social and or communication difficulties. The "significant" is explained, from memory, as being persistant and affecting daily functioning

No one would know. I communicate very well. I think my funcitonal communication is better than my social but no one would know this. It does affect my daily functioning because it impacts on my mental health.

I asked specifically about how someone with highly developed natural abilities in social and communication skills, can possibly meet any ASD diagnostic criteria.

Have you read up on masking? To outsiders,  I seem to have natural abilties (they are natural to me anyway) but there's a tiring processing going on to make up for this. Like I said previously, autism is about processing information and how one's brain is wired, rather than outward behaviours. If someone isn't showing outward behaviours it doesn't mean that they are not autistic.

You said about your son not being represented. Did you watch the McGuinness documentary? I think he was alluding to the same sort of thing. He said his kids are sort of "in the middle" and it was difficult because they are not so "low" that they need tonnes of support, but not "high" enough that they would be able to live independently.

Apologies for making gneralisations about your son's support. I was kind of aware of this when I had sent the message but the thread got too long for me to see what you had said about it. Are you worried that austim will become too "diluted" so potential support for individuals like your son will become less? I do think more and more people will be diagnosed but that doesn't mean that everyone will need help. Edit - I think this contradicts what I might ve said earlier.  I do know to be diagnosed you need to show it has an impact on daily life. By people not needing help I'm referring to those maybe who are living in the right environment that they can live a suitable life and don't really need support as such.

me too, kind of.

Hi

Listen, I am honestly just trying to figure this stuff out. I am asking questions, not making statements and trying to pass them as facts. Its not all about my son or my experience. And just to be very clear, I did not give any information on what support my son has or not had, so I'm not sure why you assume my son gets more support than you? I am not on here to centre a conversation about him. He is not able to come on here and express himself, and may never be able to do so, so tread very carefully.

I am aware that there are many people who have very subtle ASD symptoms, and I think it is utterly tragic that many of those people go a long time, sometimes their entire life without being picked up by the system. And even those who do get a diagnosis, to the general publlic, their challenges, their disability is invisible. So, I understand why many of these people, and I think you relate to this, end up feeling so misunderstood, isolated and ultimately end up severely depressed, often suicidal. I get it, I really do. And my heart goes out to anyone in that situation! 

All I am trying to say, is it appears to me that the diagnostic process, and the definitions of autism are open to interpretation. People keep saying, well if you have a diagnosis, it must be true. I am saying I am not so sure. I hate to use MS as an example but a lot of people on here were saying it is great that she has highlighted how subtle autism can be. Maybe there is some merit in that. But its one thing to say ASD can be subtle/almost an invisible disability, and quite another to have the polar opposite characteristics of ASD, and still say this is autism. To clarify, in my first comment, I asked specifically about how someone with highly developed natural abilities in social and communication skills, can possibly meet any ASD diagnostic criteria. I am honestly happy to be corrected, but from what I have read of the diagnostic criteria, no matter where anyone is on the spectrum, and no matter how varied or subtle ones symptoms, there is one common difficulty; and that is that one must have significant social and or communication difficulties. The "significant" is explained, from memory, as being persistant and affecting daily functioning (particularly higher than average difficulty in forming/maintaining relationships both personal and in work). So, to me, even though I do not know MS, it is quite obvious to me she is very skilled in social and communication skills. I mean her job is basically chit chatting but at a high level. She gesticulates, she interacts with anyone with relative ease, and so I just dont understand it.

I am not attacking anyone on here. There are valid questions around evolving diagnostic criteria. It is confusing, and I dont want anyone to think I am having a go at them, or seeing everything through the narrow lense of my own experience. I am here to learn, so again, thank you for sharing about your own experience. I think it is terrible than anyone should have to suffer and "just get on with it" because people are not aware of their inner challenges. I wish you all the best  :-) 

Thanks for sharing this aidie. I found it very helpful and brought tears to my eyes I'm 30 and finally getting to know myself properly after a diagnosis  best wishes to everyone, we got this ️ this is a great support group that I have been added to!

This is not baiting, I am here to learn, hence why I kept thanking you and remained polite. I am very dissappointed that you have now become personal and insulting. Just because you dont like someones questions, does not excuse lashing out and accusing me of being "unable to comprehend" or being "narrow minded" and narrow sigthted". I have simply asked questions. If you dont know how to answer any of my questions rationally and politely, then perhaps it is you who needs to open your mind? I was trying to finish the chat on positive respectful note " Anyway, thank you for sharing your views. I really dont mean to offend you or anyone :-)" Its absolutely uncalled for to reply in the way you did. 

I am approaching this from multiple perspectives; a background in science,medicine and as a parent of an autistic child. I have acknowledge my own bias and I am not sure what else I can say to convince you that I am only here to learn, not to attack anyone!!! If academics can rationally debate these exact same questions, why would anyone want to close down such conversations on a forum supposed to be here designed to help answer autism questions?

You seem increasingly inclined to reducing every reasonable question to an identity politics rant. I am interested in the science and medicine around autism diagnosis, and how support is best provided for everyone on the spectrum. Its not all about me or my son and its not all about you. I appreciate I am raising questions that may make some people uncomfortable, but its not my true purpose. I think we can all agree utism is very complex, so surely the more questions we raise , and the more we debate the better. But only if it is done in a respectful manner. I have a right to be heard as do you. You have a right to your opinion as do I. I am fully aware I do not have all the answers or even half of them. I am here to learn!  I have continued to be polite at every point. I can only assume your disrespect is either a reflection of feeling insecure about your diagnosis, or a difficulty in considering a different perspective. Anyway, good night and sorry for upsetting you 

Smashin ~ my native tongue.

People like my son are not represented on these forums, they are not represented in the media or on tv

I'm really sorry about that and it must be difficult.  However, I feel, as a "high functioning" autistic person (non-gifted female aspergers) there is so much misunderstood by people that we need more awareness and representation. I don't identify with autistic people off the telly because I'm just a normal every day person. 

I don't require as much funding as your son. I'd pay for my own support myself if I could find somewhere which had availability or appropriately trained people.

Also, after having read Luke Beardon today, I do agree that environment has a lot to answer for. As we go through day to do or year by year there might be times when support is needed more or needed less. Autistic traits may not need be fixed for life.Autism is a difference in processing information and communication. That could manifest in outward behaviour or not. Sometimes I feel like an imposter in the autistic community because I think maybe I'm not "autistic enough". I don't show outward behaviours. 

The linear aspect of autism does a disservice to an individual's strengths if they are deemed "at the low end" .

Its not for you to be concerned if people are wrongly diagnosed. I sense you are really quite concerned about the future for your son and just want to get him the support that he needs. That's totally understandable. If your son is getting the support he needs then it doesn't really matter what support other people are receiving.

I think twice before posting these days but feel i need to comment. I can see where you are coming from but it sounds like your son gets a lot more support than someone like myself for example, so I don't see what the problem is.

I don't need support to live my day to day life independently so I'm not asking for it. (I do wonder about the future though and if anything happened to my partner as he takes care of a lot of stuff. However it's very unlikely I would ever get any support of this nature when I'm an aged adult).

I don't think it's a case of anyone can say they are autistic because  to say this and get relevant help, you need a clinical diagnosis.

I reiterate my point from above 

out_of_place said:

when someone isn't outwardly "autistic" they are expected to keep up with everyone else

I think a lot of people do not understand how difficult this is and the impact on ones' mental health.  And that to a certain degree, one has to suck it up and get on with it. There is little help available. And I'm not talking about support with living.  I'm talking about an hour on the phone once a week to talk things through with a professional so my head doesn't explode.

the-art-of-autism.com/.../ 

The spectrum isn't a straight line from mild to severe = not linear. Usually it is demonstrated with a diagram that I don't know the correct term for but a spiky circle thing. 

I am not sure what narrowing the spectrum would achieve, which is essentially what you are suggesting by questioning the validity of certain people's diagnosis but not others. It has always been the case that autism is a broad spectrum of the most impaired to the most gifted of individuals. You seem to take issue with the middle ground, where you cannot comprehend the autistic needs of those not glaringly obvious to you. 

In short, I think you are narrow-minded and narrow-sighted. This is what has disabled girls and women for years, the lack of insight into the female experience of autism. It's still disabling us because we still face having to justify ourselves to the parents that want their child to be the greater victim of autism and disability. 

My childhood was a misery thanks to undiagnosed autism. There is NO support for people like me so I'm not taking anything away from your son. We get diagnosed and discharged and that is that. My diagnosis has absolutely nothing to do with your son's life, or indeed yours, and your views about discrediting us are grossly offensive to me and no doubt to others. 

I'm not engaging with any more of this baiting. 

Thanks M. I have tried to be explicitly clear that I recognise by own bias with my main reference point being my lived experience with my son. My questions centre around the robustness of the diagnostic process. In my opinion, Melanie Sykes is potentially an example that the process is either not robust, or requires greater clarification. This is based on the diagnostic criteria found in text books, not my own personal definitions based on my son. From the little bit of research I have done, the main diagnostic criteria for any mental condition, can be found in either the DSM or ICD manuals. Both of these are revised constantly. The former is very prescriptive and has been largely criticised due to its tendency to overmedicalise behavior that would otherwise be described as variations of "normal". The latter is guided more by clinician discretion. So there are genuine questions over the ever changing diagnostic process. The only reason I want to know more about this, is because there is a serious danger of potentially burdening people with a "diagnosis" whilst also diluting funding and support to those with need it most. I'm not sure what you mean by the spectrum not being linear? If the diagnosis is a bit wooly, and the assessment process varies, which I have read it does, then there will be inconsistant outcomes in terms of support. Moreover, if the system of support is overwhelmed, which it clearly is, then over diagnosis wil inevitably be contributing to dilution of support (to everyone at any point in the spectrum)

As I keep saying, I do not know MS, and I do not know you personally either. I am not questioning you or anyone on here specifically. I am just raising my concern that I am worried people are potentially being incorrectly diagnosed. It is not just based on my own experience. Yes, I have naturally made anecdotal reference points to my son, but you have similarly outlined your own symptoms/difficulties, and no doubt that will bias your perspective too. I guess what I am trying to say, without wishing to upset anyone, is that we all need clearer objective reference points of some description, otherwise anyone can say they are autistic. Anyway, thank you for sharing your views. I really dont mean to offend you or anyone :-)

Maybe as a parent you need to stop comparing your son to other people. So many parents do this and it really doesn't benefit their children. 

I'm not sure what relevance your son's needs have to my needs to be honest. If you want him to be perceived as more in need, you don't really need to use me or anyone else as a benchmark. Most care and support is person-centred these days so it is irrelevant how he compares to anyone else. The autistic spectrum isn't linear but the support needs are assessed in the way you are saying already when it comes to social care assessment, so it already works that way. 

Thanks M for yur reply. I think I see where you ae coming from. But do you agree we need some way to distinguish between someone with your challenges and someone like my son? I hate to make comparisons and I do not wish to dminish any suffering of any individual. I genuinely sympathise with your difficulties.

However,one of the problems I have, is that many of the difficulties you are describing are challenges I can easily relate to, maybe even more so. I dont want to bore you with the woes of my life or diminish yours but   thorughout my entire life I have had difficulty making friends, difficulty concentrating, obsessions, difficulty staying in a job, severe bouts of depression, etc. I could see how an autism diagnosis could also be applied to me. Yet, I do not consider myself autistic, andeven if someone did give me a diagnosis, I would want to differentiate my difficulties to be on a completely different level to my son.

Its not to say you or I or anyone else with such difficulties dont have challenges that require support. But those difficulties are still nowhere near even approaching the same extreme levels of difficulties that "low functioning" autistic people have. I dont see how catogorising your level of difficulty should be an issue. Everything is relative. High functioning is still a form of autism, and autism is still considered, at least by many to be a condition that requires support. So noone is saying you dont need support. Its just saying you dont need as much support as someone else.

From what I understand, the process of differential daignosis of any condition, requires one to be able to distinquish between e.g. chest pain caused by a lung, heart, muscle or other issue. And within any particular condition, most are catogorised as "mild moderate or severe", with even further qualative and quantative descriptors, depending on the particular condition. So for heart disease, most doctors will take angina serious and offer lots of support, but someone having a heart attack or suffering severe heart failure will require much more attention. An experience of angina is a genuine threat to ones life,  but it is much easier to manage than someone with more advanced problems. Im not comparing autism directly but if we consider autism as a spectrum, surely that means there are varying needs, and those needs require an element of triage and associated definitions? 

But I do get where your coming from :-)

I suppose my issue with being seen as "high functioning" is that it diminishes the day to day difficulties that I have. 

Yes, I have an education and a professional job, but what people don't see behind that exterior is the struggle to manage the most simple of tasks without anxiety. My executive function is poor so it is not unusual for me or my home to be unclean (not just untidy/unkempt). Patt of this problem is that because I can work and I can "pass" as high functioning, there is no support for this. I don't receive any benefits, yet I can only manage working part time unless I accept regular burnout, so I don't have a lot of disposable income to pay for support myself. I'm very poor at managing finances at all. Yet my exterior is that of a successful woman who juggles work, sometimes training/education, and parenthood/marriage. 

If I was single I'd probably have attempted suicide at least once. My children are a protective factor for me that counteract those thoughts. 

Being seen as "high functioning" really isn't going to take any of these pressures from me. It would just make me even more isolated than I already feel. 

I think it won't rest in my head till I'm asleep.  But thank you.

out_of_place said:

False memory! It wasn't her who said that! It was a man. Strange what our memories do!

I just recalled the advert involving Melanie Sykes:

Sorry to hear you had a bad call, hopefully you can relax now

I had a really difficult experience today. I had an initial telephone consultation with my local mental health people. I spent almost an hour on the phone with someone who wouldn't listen to me and kept making assumptions, was talking too fast, didnt make sense and couldnt answer me straight before finally telling me they couldnt help. I came off the phone feeling confused about what had happened. That I couldn't articulate myself or get my point across because I couldn't match his communication style.

I have felt frustrated and upset the entire day and it's made me feel worse. However I had an excellent online lesson with my students and they made good progress.

I hope this can show how we have spiky profiles.

(I would say the phone call was a miss match of communication styles but felt I moulded myself to his ways rather than he adjusting his approach. Altho this made no difference in the end. It's times like this I feel there's a deficit in my communication when in reality it's different styles that don't suit each other. I'm beyond frustrated.)