Opinions on the levels of ASD?

I would like to have been offered something, even if I said no to most of it, I would have liked and would still like help and support with things that make my brain glaze over at the very mention of them, like filling in forms., Maybe I've spent to long filling in forms from the DWP to feel that I'm not being asked trick question's designed to make you fail.

I would like help with tech and many of the other things that have come along in the course of my life that I've had no training with or any idea how to use, if they're right for me or what? I'm fed up of being told 'it's intuitive', it's not to me and I don't believe it's anything to do with autism ether, I think there's an assumption that everybody has had all this tech since it first came out and have updated through every model since and have in a sense grown with the tech.

I would like help with things that really scare me, like going to the dentist, I go to pieces, have a melt down, hit people, try and hide etc. I don't want to be shown the instruments of my torture as a way of trying to familiarise myself with whats about to happen, nor do I want to be told off or de-listed because they can't cope with my allergies

But I thought the point of this topic was support for older level 1 people. They are more likely to be able to use a forum and are less likely to have support. So perhaps they are represented here.

What support would you have liked?  Genuine question.

The best way to not write people off is to identify them young and provide support at the start, which is where I think the resources are prioritised.

An anonymous forum is perhaps the easiest place for someone to say hello because you are hidden. But it's also more difficult to connect as you don't know who anyone is. It is also tough to join anything that is established. I don't know how you ease people in and give them confidence.

A closed forum has advantages, but requires a gatekeeper and may put off more people. Perhaps separate areas based on your profile to make it less intimidating and avoid swamping those who are more shy. Perhaps a shyness badge so people know to go easy.

I think they are unhelpfull and prefer the ICD-11 subclasification system which relates more it interlectual and verbal capabilities within the context of autism. It doesn't imply difrences in need but rather difrences of spicific types of abilities.

Deleted User said:

I think people on this forum are really very unrepresentative of the wider autistic population because it requires a level of communication and sociability

I agree.

I’m not suggesting the government runs a dating agency, and we didn’t “all” get along fine in the old days, nor can we all find these things ourselves. Social difficulties are one of the most important defining characteristics of autism.

I think people on this forum are really very unrepresentative of the wider autistic population because it requires a level of communication and sociability, and even then behaviours on here chase many people away, with depressing frequency.

What I’m saying is that there are likely over a million autistic people in the UK and we deserve to be given the best possible chance in life not written off.

I agree about teaching social skills, but children should be getting those at home, I think it's shocking how many children start school without being toilet trained and can't drink from a cup. It shouldn't be up to schools to teach these very basics.

I think we need to think about what it is right for schools to teach and are children starting school to young? Personally I think 3 is to young and it seems to be more for the benefits of the adults than the children, like breakfast clubs, these are a cheap way of solving a crisis in child care. People can get to work on time by getting children to school earlier in the morning. SOme children are just slower than others to pass the developmental milestones, there's nothing wrong with them, they're just developing at a different rate to others of thier age.

I don't think the government should get involved in relationships and dating, somehow we all managed before the internet and I think people forget that. Although we did have more ways of meeting people and getting out into the world. Also given how wrong the algorhythums often are would we want something like a "date centre" along the lines of the job centre? I know I wouldn't, how many useless lumps would they try and fob me off with? I'm quite capable of finding those all by myself thank you very much. I doubt that a matching system run by the government would do any better than the comercially available ones, and most of those throw up matches that I think 'in what universe...'  I've been on a few in my time and many just gave me matches that were within a 100 miles of where I lived and nothing else. Apart from the one that gave me no matches at all, but that one ended up having to redo all it's crietria for the UK as what the Americans wanted was so totally different.

I just asked to be refered, I'm lucky that I have good relationships with my GP's, I said I was struggling mentally, I suspected I might have autism and whether or not I had, a psychologist might have tools in their toolbox they could teach me. I rarely go to the doctors without some idea of what I want from them and I do reherse what I'm going to tell them. I have surprised a couple of doctors who've made assumptions about me, like about how good my diet is and that I have a brisk walk for between 30 mins and over an hour a day, that I don't believe everything I read online and that if I couldn't use it as a source in an academic essay I pretty much ignore it.

Schools absolutely should be doing more to teach children social skills - this is a priority in countries such as Norway.

Romance is a personal issue and not something the state can control. It can't run a dating agency.

It's main issue is tax, so getting people into jobs and off benefits is of interest, but not if it costs more than they save, which is why a lot of the schemes are so half baked.

Also they outsource the employment stuff which means providers just take the money and do as little as possible. Some schemes would be cheaper if they just gave people money.

Suicide they can't condone, but given it is the leading cause of death in working age men generally and is not a big deal, autistic suicide is not that important.

Yes I phrased it badly (the jumping through hoops bit) as a shortcut for (in my case) being on a waiting list for 18 months and then going through an assessment process which stirred up a load of stuff.  Not something I would have gone through for the fun of it if I'd been "getting on ok"

I was fairly obviously in need of a psychologist 4 years ago, I think, but I didn't ask for one and the GP did not offer one. Do you have to ask?

I stuffed it all down again, but this time I just ignored the GP and did it privately.  I didn't have vocabulary before which meant I just rambled. But I saw loads of vids on YouTube for emotional neglect and narcissistic abuse which resonated, so I went to see if this was the issue and what could be done. Then they said autism, which opened wounds from the past and made things worse, and here I am.

The suicide rate amongst autistic people is approximately 3x that of the general population. Only around 30% of autistic people are in employment, compared to 80% of the general population. Over half of autistic people never have a romantic partner in their whole life.

Even if people feel no empathy or sympathy for us, it is surely in the state’s interest to do something about these statistics.

I didn't have to jump through any hoops, I just went to the doctor and asked to be refered to a psychologist, I did and we went from there. But this was 2010, things were different, women were just starting to be recognised as having ASC, little seemed to be known about it, things have changed so much in the last 15 years from a diagnostic point of view at least.

Yes I agree

But the state will claim it is not there to help people thrive, it has a safety net just to keep people going. Since you can keep going by yourself they don't need to intervene.

I am under no illusion I will get anything. I'm not even sure whether to tell the GP.

Agree with this. I was diagnosed at 52 and got zero help, but everyone seems to have missed the fact that I survived - rather miserably - not thrived.

Totally agree.  And besides, most people who've got through 50 years of life undiagnosed wouldn't have jumped through the hoops to get a diagnosis unless they've been struggling in some way,  So it's pretty diminishing to be told you've "got on OK"

I get that, I feel like I deal with overstimulation in loud environments by just zoning out, not really thinking about anything in particular, still distressed, just not acknowledging or dealing with it

Apparently I can mask very well too. Though I don’t feel I can do it apparently I do as although I feel anxious as hell inside I look completely still and normal and calm from the outside. It’s like an autistic shutdown in a way but being masked 

Expecto_Patronum said:

I think it's difficult because there are definitely people that have more support needs than others and how else do you evidence this? But I don't think it's as simple as dividing people into levels. What one person needs support with is very different to another

I definitely agree with everything you have said. I feel like the struggles of being diagnosed as level 1 come mainly from the fact that it's sometimes seen as "not requiring support at all", when its really just lower than others. High maskers tend to fall under level 1, and like you said, mental health is a big struggle for high maskers.