Vulnerable

A said:

More importantly, my biggest spikey deficit - social communication - seems profound

I was at classical autism level for social communication. I was never given a level re support needs, but a diagnosis of  Asperger's would suggest 'level  1' . However I stack up badly compared to more than a few people  who are also regarded as level 1.  I certainly don't compare well  to a good number of people on these forums ;  when it comes to achievements and functioning. That's not to say those people have no difficulties. It's a comparative thing, rather than a yes/no thing.

They tend to mask to a far greater degree than I do. That can lead to a far greater chance of burnout  than is the case with me. 

Before I turn off my PC and attempt to turn off my brain, I just wanted to say that 'vulnerable' and 'support needs' are both open to interpretation and are being interpreted in different ways on this thread.

Thank you Star  for bringing this up for discussion.

A said:

Someone very senior (who I've known for 25 years) called me on the morning of my last day of work and told me to take leave and laid it on very thick that I'm very highly regarded and nobody would think any less of me for it.

That's brilliant but remember you've worked hard for and earned that respect.

A said:

It's all the random other people who don't know you well and don't understand why you're being "difficult". Well from now on I'm going to tell them,

That's what I found in my jobs - a diagnosis is very helpful here isn't it.

I think this is an excellent New Year's resolution.

Thanks Debbie,

Someone very senior (who I've known for 25 years) called me on the morning of my last day of work and told me to take leave and laid it on very thick that I'm very highly regarded and nobody would think any less of me for it. I nearly cried. I think I owe him an explanation at the very least, if he hasn't figured it out already. 

That's the thing - the people who know you and what you're capable of are likely to be understanding. It's all the random other people who don't know you well and don't understand why you're being "difficult". Well from now on I'm going to tell them,

A said:

If I have a new years resolution at all this year, it's going to be being completely open about it. No more hiding or pretending, and I'll just have to accept any negative consequences. 

I can't go through this again.

I'm sorry to hear this A. 

I'll just quote  myself from below here:

Debbie temp said:

In my jobs, I didn't know I was autistic but did have instances where I changed lighting and asked for music to be turned off. 

These requirements of mine that I now know made me vulnerable in the workplace, were sometimes supported but most often not.

I had a lot of time off sick from various jobs because of unmet needs and a few times where I walked out of a job in tears and had what I thought of as a 'breakdown'.

If I had been supported (ie my 'support needs' were recognised and respected) then I could have stayed in the jobs.

Challenges abound in work situations for us autistics.

I've had a LOT of jobs including years of temping.

I dearly hope that this works out well for you.

Debbie temp said:

A person diagnosed with Level 1 autism is likely to experience burnout from long-term masking, or working to hide autism traits and appear neurotypical

This is what set me on my journey to diagnosis. The woman at work who I know is also autistic had the same experience.

And it's what I've been going through for the last couple of months, albeit not as profoundly as some of my previous episodes.

I know when I go back to work after Christmas I'm going to have to explain what the heck was going on to a number of colleagues who (I assume) don't know I'm autistic. If I have a new years resolution at all this year, it's going to be being completely open about it. No more hiding or pretending, and I'll just have to accept any negative consequences. 

I can't go through this again.

VLD said:

Is a reasonable adjustment a support need then? Being allowed time out from long meetings was a reasonable adjustment but I would nit see it as a support need

Yes.

You have a diagnosis of autism, the employer respects this, and therefore is supporting you by making the reasonable adjustment.

In my jobs, I didn't know I was autistic but did have instances where I changed lighting and asked for music to be turned off. 

These requirements of mine that I now know made me vulnerable in the workplace, were sometimes supported but most often not.

I had a lot of time off sick from various jobs because of unmet needs and a few times where I walked out of a job in tears and had what I thought of as a 'breakdown'.

If I had been supported (ie my 'support needs' were recognised and respected) then I could have stayed in the jobs.

A said:

Had a quick look at the DSM-IV. The criteria seem largely the same as ASD in DSM-V. Only difference I think is that it mentions no clinically significant delay to speech etc as a small child.

Thank you.

Had a quick look at the DSM-IV. The criteria seem largely the same as ASD in DSM-V. Only difference I think is that it mentions no clinically significant delay to speech etc as a small child.

So I guess it’s saying that there’s no intellectual impairment, not that higher than usual intelligence would be expected.

As an aside, because I posted about Level 1 support needs, simply to show that we have support needs that we probably mask, that are unmet, that we may even hide from ourselves, that may eventually break us, this discussion about the levels -v- ASD might be of interest:

 RE: Level of autism 

A said:

Tbh I’ve never looked at the criteria for what used to be Asperger’s. I assumed it was equivalent to level 1?

I've just done a bit of reading about it and I'm not sure either.

It was my impression that high intelligence was one of the criteria.

Tbh I’ve never looked at the criteria for what used to be Asperger’s. I assumed it was equivalent to level 1?

I agree, VLD. Before I retired I had to get adjustments in my workplace, but I don't see that as "support needs" and I had worked for decades before that without any adjustments. I just found that as I aged, I became less able to cope. Plus, many people need adjustments - some non autistic people may not be able to concentrate if the environment is noisy.

I see support as being a requirement for help in day to day living, which so far I have been lucky not to have needed. I have worked, some times full time and others part time, I have a long term partner and I have been running my own home and looking after my own finances since I was 18 years old. But I still have problems with non verbal communication, emotional regulation, being required to do something unexpectedly, and I have sensory sensitivities and special interests that I research extensively. Since my self discovery, I have come to understand my own needs and have put things in place to make sure I can cope much better. I don't "look" autistic, but that's because people don't realise how hard I have worked to get where I am. Autistic people are often stronger and more resilient than others realise.

Bunny said:

A key caveat I’d flag to that website’s content is that the DSM levels very intentionally don’t say “low” support needs. This seems to be a common misconception across various publications.

Yes, thanks - I just wanted something to show for the sorts of support needs others here probably overlook in everyday life because we mask so much and just suffer silently until we don't, and break.

A key caveat I’d flag to that website’s content is that the DSM levels very intentionally don’t say “low” support needs (or “medium” or “high” ones). Sadly, this seems to be a common misconception across various publications.

The levels, as specified in the diagnostic criteria, are:

1. Requiring support.

2. Requiring substantial support.

3. Requiring very substantial support.

A said:

But I think the levels hide the spikey nature of the condition.

In many ways I’d be considered extremely high functioning or gifted and thus people just didn’t realise I was ASD at all. But that doesn’t take account of the extra struggle I was hiding to appear they way.

More importantly, my biggest spikey deficit - social communication - seems profound. In that aspect i suspect I would be higher than level 1.

In the past, before your time here, there were discussions on this subject.

I found myself torn because I want to be differentiated from those who are more profoundly disabled by autism than I am (out of respect to them) but also, your point is quite correct, true, valid etc.

I've not come across an 'ideal' description.

What did you think of the Aspergers' criteria for diagnosis, irrespective of the controversial name?

I have been thinking about the level 1/2/3 system lately. I didn’t get a level assigned by my assessment (I think it’s a US thing?) but I always assumed I would have been level 1.

But I think the levels hide the spikey nature of the condition.

In many ways I’d be considered extremely high functioning or gifted and thus people just didn’t realise I was ASD at all. But that doesn’t take account of the extra struggle I was hiding to appear they way.

More importantly, my biggest spikey deficit - social communication - seems profound. In that aspect i suspect I would be higher than level 1.

It’s all hypothetical anyway, as there is no support for adults.

A person diagnosed with Level 1 autism is likely to experience burnout from long-term masking, or working to hide autism traits and appear neurotypical.6

They are usually able to communicate in full sentences most of the time, but may have trouble engaging in extended, back-and-forth communication with neurotypical people. This can increase the risk of mental health issues.

This alone demonstrates our vulnerability.

VLD said:

Is a reasonable adjustment a support need then? Being allowed time out from long meetings was a reasonable adjustment

Yes :)

Star said:

Do you think having ASD  we deserve to be termed vulnerable adult s .

Yes, I do.