Published on 12, July, 2020
https://www.bbc.co.uk/news/uk-59352983
Melanie Sykes has just been diagnosed as being autistic
She like many here remained undiagnosed until later in life.
very positive article
Are you basing this on her job?
Based on stereotypes of autism, I shouldn't be able to do my job either, as my job requires a lot of empathy and people skills. Something Melanie said on Loose Women really resonated with me actually, when she said people are her interest. I've said this many times that people are a fixation for me, especially meeting people (I get bored once I know them well).
If you question her diagnosis then you are questioning a lot of us. My difficulties are often very internalised, nobody ever sees my struggles until I'm approaching meltdown or shutdown. Even that is usually private at home.
Referring to people as high or low functioning is pretty outdated too these days. Even "high functioning" autistic people have support needs. Just because you cannot relate them to your non-verbal child doesn't mean that they don't exist.
I did not question your diagnosis. Please point to where exactly I questioned your personal diagnosis? How am I debating with the people who diagnose others? Noone has responded to me and said , yeah I daignose people and I have in turn slated them. I have given rise to questions over the diagnostic process. I have not questioned yours or anyone on heres individual diagnosis. I have said I do not understand MS diagnosis. I have not said MS is not autistic. I have asked how it is possible based on what I know. I have asked people to share their understanding and have thanked everyone who has provided information to help me. When you dont like the line of questioning, your response is to shut it down or resort to insults such calling me a "troll".
Wait until you find out there are autistic doctors too. You are going to combust with the confusion.
Our diagnosis isn't really up for debate though. Debate is a two way process and I certainly don't want to be drawn into a debate about whether I am or aren't actually autistic. For many people on this forum, it took 2+ years to wait for their assessment and diagnosis.
To claim to be offended because someone has suggested to debate with the people who diagnose others is outright ridiculous. No wonder I think you are a troll. You are behaving like one!
No problem :) I am a complete mess now emotionally and the mind fog i awaklad fget iws now comign down so i ned to step awya.
Thank you for being supportive and putting this more eloquently than I was able to.
It really isn't the place to be questioning the validity of the diagnosis we have received, certainly not by someone who has never been through that experience themselves or has any awareness of adult assessment.
I am certainly not saying get off this forum. Please re-read what I have said.
Nor am I questioning your motives. I am suggesting that based on your stated motives you will surely learn more from speaking to experts in the profession. You might learn something from speaking to some people who live and suffer with ASD but surely you can see that the line of your questioning is a bit on the knuckle and - as clearly shown on this thread - liable to insult and offend unless done very carefully. The proof is in the pudding on this one because you have upset people.
I disagree that you have been polite and respectful on this thread.
How exactly have I insulted you?
Very helpful. Many thanks :-)
I guess it l need to read up on masking but inevitably, it does lead to the question of how one can confirm masking.
Camouflaging or masking refers to strategies that individuals with ASD use to mask social difficulties and enable them to “pass” as non-autistic in social situations (Hull et al., 2017; Livingston et al., 2020). Camouflaging consists of complex copying behaviours, compensation, and/or masking of some personality traits or autistic characteristics, with an adaptive purpose that promotes functioning in response to specific environmental or situational demands (Hull et al., 2019; Tubío-Fungueiriño et al., 2020). Examples of camouflaging include mimicking facial expressions of a conversation partner, forcing oneself to make eye contact or stop talking about a specific interest, and using social scripts in everyday interactions.
https://intercommunityaction.org/camouflaging-masking-in-autism-spectrum-disorder/
“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5509825/
How to spot SEND pupils who are 'social masking': As a teacher, you can identify this key character trait in girls with autism spectrum disorder
https://www.tes.com/news/how-spot-send-pupils-who-are-social-masking
Autism Masking: To Blend or Not to Blend
https://www.healthline.com/health/autism/autism-masking
Social camouflaging in autism: Is it time to lose the mask?
https://journals.sagepub.com/doi/full/10.1177/1362361319878559
Is Autistic Camouflaging Really Bad for Your Health? The true impact of masking in women with autism.
https://www.psychologytoday.com/gb/blog/women-autism-spectrum-disorder/202010/is-autistic-camouflaging-really-bad-your-health
Hi, thanks for your reply, I think I know what you are saying. Have you managed to find any tricks to help support you in these situations? Cheers :-)
I think so but I dont know. No worries, I need to get one with things too. Have a nice day :-)
I do not like your tone. So basically you are saying you dont like my line of questions and you dont trust my motivations for asking them, and so I should shut up and get off the forum. Who are you to say who should and should not ask questions, and where they should be asked and to whom? I dont know if this forum is necessarily the best place but I would have thought speaking to as many people who either have autism, are learning about autism or support someone with autism, would be a very good starting place to learn?At every point in my questions, I have been polite and respectuful. Can you say the same by the manner of your post? Not everyone will like or agree with everyone, but is it not more harmful to shut down debate? That is basically what you are telling me to do. I have emphasised I do not wish to argue or upset anyone. Just because you dont like my line of questioning, does not give you or anyone the right to insult me.
Do we need to distinguish autistic traits from actual autism?
I think this is what an autism diagnosis does.
Short reply but I'm going out now. Might elaborate later.
someone who gets by/gets pass marks for social and communication skills
Long before Autism was in my vocabulary I took on a posting as an instructor because I knew my social skills were crap. I thought if I was an instructor it would enable my social skills. In the classroom, great I could talk and be as sociable as you like, once i left my brain clammed up and I was back in the same situation where by brain simply could not think of a single thing to say
Fair enough, I cant really disagree with anything you have said to be honest.
I totally understand that such difficulties are not always outwardly visible but this is not someone who gets by/gets pass marks for social and communication skills; she actually outwardly excells in these key diagnostic areas.
In terms of masking, I I have not read up on it, and I am open to accept this may explain the discrepancies. I can appreciate it using a slightly different example of demential patients, some of whom are able to mask their memory other issues. I have seen this first hand. However, after spending enough time with these patients, we start to see beyond the surface layers of early impressions. So yeah, I guess this could be a similar process that explains MS diagnosis.
I guess it l need to read up on masking but inevitably, it does lead to the question of how one can confirm masking. I dont think this is easy. Medical conditions of any type are generally never one size fits all, so this compelxity is not unique to autism. But autism is clearly a very very complex subject, which is why I am on here trying to pick peoples brains.
A diagnosis of any sort, as far as I am aware, relies on both signs and symptoms. Signs are always outwardly observable and symptoms are those which a patient experiences and reports. If a patient does not report symptoms, they will go unrecognised,unless they also have signs which leads others to enquire more about those inward symptoms. In either case, clinicians like to measure both signs and symptoms, usually on a scale that describes the extent of any condition. This is done not just for the sake of labeling but to ensure the right support is given at the right time to the right person.
I quess the difficulty with diagnosing someone who has no outward objective measurable way of confirming any signs of autism, is that we are relying purely on their subjective symptoms. It is not to say those experiences are any less real, or that they are not genuinely suffering. For example, many people experience functional disorders, i.e. there are no structural or physiological issue that can be picked up by any measurable tests, but the person still experiences pain or another difficulties. So for example, many people experience back pain, and think there issue is so severe that they stop doing many of their usual activities. Yet when thoroughly tested, scans, bloods, physio assessment etc, there is no physical problem. The pain is considered to be linked to the psychology of the person. Their experience of pain is real, but they do not merit any diagnosis of having any physical issue with their back. My question is perhaps many people feel they have autistic traits and believe this limits them to do certain things but does it necessarily mean they actually have autism? Do we need to distinguish autistic traits from actual autism? I dont know, its just a question. I just think that basing any medical diagnosis purely on subjective symptoms creates challenges in having any real confidence in confirming those diagnosis.
Sorry, my comments are a bit long winded. But yeah, I do worry that the diagnostic criteria is becoming overly subjective, and how this may impact provision of support. I agree that not everyone will need the same level of support and that this may not correlate perfectly with traditionally "high" and "low" definitions. There is a lot of complexity. I was aware Paddy had children on the spectrum and I'lll check it out thanks.
Anyway, thank you very much again for your input. It is always good to learn about other peoples experiences, especially when they are different to my own biased perspectives. Best wishes :-)
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.
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 :-)
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
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_step 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/.../
Giraffe said: It's very wrong that someone is accusing you of not loving your child;
It was a bit of mistake to imagine that someone had even made such an accusation.
“When you debate a person about something that affects them more than it affects you, remember that it will take a much greater emotional toll on them than on you. For you it may feel like an academic exercise. For them, it feels like revealing their pain only to have you dismiss their experience and sometimes their humanity. The fact that you might remain more calm under these circumstances is a consequence of your privilege, not increased objectivity on your part. Stay humble.”
I'm sorry about your son. I hope he gets the support he needs. It's very wrong that someone is accusing you of not loving your child; I've worked with children for many years now and it's clear from the way you speak about your child that you do love him and want what's best for him. But I have to say I agree that you shouldn't be bringing these things up on a forum for Autistic people. As a woman diagnosed at the age of 33 and who nearly died of anorexia recently having suffered since my early teens (the anorexia – which will never leave me – is a result of Autistic tendencies, as it is for many women). Yes I can speak and hold down a job and a marriage (when I'm not in hospital) but that doesn't mean I'm well or capable. I understand why people ask these questions and can certainly understand why the parent of a child with your son's difficulties would ask these questions, but whilst I don't think you're necessarily being disrespectful, perhaps you need to show a little empathy and sensitivity and not debate about it with people who are actually affected by 'high functioning' Autism. You keep saying you 'don't want to offend' etc and then don't seem to take the hint when people assert boundaries. There's a time and a place. We hear this stuff all the time, and it takes an emotional toll. This is supposed to be a safe space for us.
May I ask out of interest why it would cross your mind (ie "how can you tell")? Just curious.
I also think that diagnostic criteria are evolving butI know there has to be some sort of "cut off". I scored just above the cut off on my assessment. With some people, it may seem that they have more obvious difficulties but many years ago they might not have even got a diagnosis. So I think things are evolving all the time.
I do think as more people explore information which is available and so start talking about their own experiences, this goes to redefining what autism means. For example, when I started reading about autism and aspergers for myself I discounted it in the first instance because I couldn't relate to it. It was about stereotypical male behaviour and from official sources like the nhs. But then as I started reading more (a mixture of first hand experiences and also that of qualified people) it began to make more sense. As I talk about my own experiences this may feed into how other people relate to it too.
Edit - I think I'm trying to say there may be common shared experiences of people with autism which are not in "official" material but it's only since we have more access to sharing information that these are brought to the open more.
On the other hand, I do wonder sometimes if what people describe can be attributed to autism or if it's something else like personality. And then these things get thrown into the unofficial mix of autism. I would say there's plenty I cannot relate to but a lot i can.
I have thought about this before going off on so many branches in my head. I don't know if I have explained correctly what I mean and its certainly not a personal attack on anyone autistic or not.
Brill, that's the one! I like how she says we have got to learn each others' language. Her hair looked like a freshly windswept cat!
She does! That appearance on the talk show was good. it was an Irish chat show, it's on youtube somewhere.
she has 2 programmes on Netflix
There's a great comedian called Hannah Gadsby. She is diagnosed autistic. Maybe check her out. One of her interviews on a talk show I seem to remember she discusses how she is fine with being on stage because she is in control. This is also true to a certain extent of myself as a tutor. I know my role. Conversations are on my terms and usually functional.
I feel compelled to reply and attempt to explain why your comments are causing so much upset - I read this thread last night and was also upset by it and the assumptions being made. This is not an attack - this is me attempting to address points you have raised.
Sorry I've run out of steam.
"For your information as well, an outcome of an autism assessment can be to have autistic traits but to not meet the full criteria sufficiently. My friend's son had this result from their assessment."
That's the sort of information I am hoping people will share. I find this helpful and again thank you for sharing useful information.
Why do I need to have experience of adult assesment process to ask a question of how in works? I also dont have COVID but I find it useful to know the assessment process of how it is diagnosed. For two reasons, one out of general interest because of how prevalent it is and two, how I would go about getting such an assessment if I was worried I had this condition.
There you go again 'extremely unpleasan to speak to". You seem to base this purely on the fact you are offended by me daring to share my genuine doubts over the diagnostic process. I could see your point if I had stated everyting as fact but I put it as a question, I welcomed dialogue and most importantly was open to learn from others. Troll by denfinition means to deliberately antogonise people. It is your opinion that is my intention. It is not, so calling me a troll is an insult because I am not trying to upset people. If I was, you would know all about it! I have deliberately tried to remain measured, appreciative to comments, even when others sresort to name calling etc.
In terms of my sons diagnosis, yeah ofcourse, I would not like it if someone casting doubt over his diagnosis. I have already experienced this. And I'll tell you something else for free, before I realised my son had issues, I thought his behaviour was something to do with us as parents. I felt a complete failure. In some ways it was a relief to realise he had a condition that needed extra support. It's been a steep learing process for all of us, and there will always be more to learn. It is for that exact reason I am asking questions about the diagnostic process for adults. MS was the trigger on here for me to respond. I dont get her diagnosis. Its not the same as my son, because he is very very obvious. So, its all about learning by asking probing questions. If you dont understand, do not you ask people? You could argue as someone else did that its not the right place. Ok, maybe. But why am I asking, and what am I looking for? I can honestly say, it is not to antagonise you or anyone else. I dont understand why someone like MS (with seemingly exceptional social/communication skills) is able to get a diagnosis. It raises all sorts of questions in my mind. Some people have been helpful on here by pointing towards resources on "masking". You have just confirmed that "autistic traits" is also an actual thing. And there are other useful replies that have helped me learn more. But at no point have I criticised anyone, called anyone mean names etc. There is no need for that. You do not know me. Anyway, I will leave it at that. Once again, sorry to upset you or anyone else. I wish you all the best , and I mean that genuinely, even if you dont believe me ;-)
I have not stated anything as fact. I have openly said I am here to learn. I have openly said I come from a biased and limited perspective. I do appreciate that is is a sensative subject and I can see how some people may think I am trying to provoke a reaction. I really honestly do not want to upset anyone!!! Maybe you are right that it is not the best place to have this conversation. Point taken. But I have already learned a great deal from taking on some of the information people have shared with me here. I am happy to admit if I have incorrectly assumed something and get something wrong. I do not know the answers. But they only way to help with that is to share your own knowledge with me. Counter any assumptions you think I have made. But you have not done that, you have just came on and said you find my questioning offensive and should take them elsewhere. I was suggest essentiall telling me to shut up and bugger of is more offensive than me sharing my doubts over the diagnostic process, especially when I have not stated anything as fact. If you read carefully, I am actually in some ways looking for reassurance that the diagnostic process is actually more robust than I fear it is. I am open to listening to what you or anyone has to say. I am genuinely looking for answers, not to offend and not to argue. Please believe me :-)
Why do you say I have been impolite or direspectful? Are you just basing this on me casting doubt over the diagnostic process, or is it because I have said I do not understand MS diagnosis? Either way, I asked if anyone could help me understand the process better. I certainly will be speaking to professionals but I felt it was very important to get an idea of peoples lived experience. I was aware that it may be on the knuckle as you say, and I am sorry to upset anyone but I need ask this question. I think it is useful for the autistic community to have these conversations. If you shut down every question that offends people, noone will learning anything from each other. I value what experience and knowledge you may wish to genuinely share with me. If you just come on and say I dont like what you asked, take your question elsewhere, its not healthy for anyone. Clearly it is sensative subject but it is not in anyway meant to be personal to anyone. Not everyone has repsonded to me in the same way. Some people have been very helpful. But I appreciate it is a sensative subject. Sorry again if I have upset you :-)
ConsciousBadger suggested you debate the elements of the diagnostic criteria with the people who do the assessments, not the people being diagnosed.
You also said yourself that you haven't been diagnosed, therefore whether you self identify or not (which you also said you dont), you haven't experienced adult assessment.
For your information as well, an outcome of an autism assessment can be to have autistic traits but to not meet the full criteria sufficiently. My friend's son had this result from their assessment.
I just find you extremely unpleasant to speak to. I do not use "troll" as an insult but as an observation of your contribution to this forum. To say you don't understand something therefore you doubt the validity of something that is so personal to people is rude and insensitive. No doubt you wouldn't respect the same approach to your son's diagnosis.
Your individual diagnosis is not up for debate, I completely agree! The diagnostic process is already and has been for some time a matter of debate. Whether you like it or not, it is not a debate that will go away. Stop taking things personally. Do you mind if I ask a personal question, do you have a daignosis?
How do you know I am not a doctor? How do you know I am not autistic?