My thoughts on “mild” autism

NAS94025 said:

Obviously my masking was effective enough for professionals and teachers not to have known, even myself

I am still considering if to pursue an assessment for the reason you mentioned. I feel like I won’t be taken seriously but I really need some validation of why I struggle so much. I always feel as if I’m on the edge of a meltdown to get through the day, looks great to everyone on the outside but internally I feel horrible. I’m worried my assessor won’t take me seriously and then where does that leave me…… feeling so different in so many ways but with no explanation. 
The problem for me now is I’m so aware of my struggles I almost feel worse. 

Well said, and thank you for sharing the Autism Umbrella resource. This is a useful summary taken from the text:

'It’s common for autistic people to have difficulties dismissed or described as being 'mild', when in fact, to reach the criteria for diagnosis, there must be considerable difficulties in several areas of life. Likewise, autistic people described as being ‘severe’ can repeatedly experience having skills and strengths overlooked.'

The problem with 'high functioning'  and 'low functioning' is the rather one dimensional way it's used.  'Symptoms' are bunched together from which an overall labelling of 'high' 'moderate' and 'low' functioning is obtained. The problem is there are multiple components to being autistic, and very few will be all high or all  low functioning in those components.

Another failure, not seeing things in comparative terms.  Needing comparatively less help and support  is very much different from not needing any help and support at all. 

I came across this a few years ago.  It's more in line ,IMO, as to how  things should be in order for an autistic person to get at least an adequate level of help and support.

www.yesataretelearningtrust.net/.../Autism Umbrella.pdf

I actually got a diagnosis of just having autism without specifying the extent, I went to college, I had a few friends, and I would go on solo trips, and if you think it's mild, yes, but last semester, just Because I failed a class, I locked myself in the dormitory, yelled, and kept shaking myself. Finally, I called my mother with tears in my eyes and asked her to take me home right now (I finally sat three hours train ride home) and then I had to ask my mom to write an email for me because I was totally devastated. Although it turned out in the end that it was indeed the professor who lost my homework, and he couldn't be blamed on me. I got points but was also asked why I wasn't even communicating with him. So maybe I'm just hiding this side of me that's really affecting me

I think the 'mild/severe' labels are very unhelpful. As Alienatedhuman said, 'For others around it’s “mild” because it affects them mildly, because Ive mastered my coping strategies.'

The 'mild' label suggests that autism is some sort of quirk, and one that's easy to deal with. It doesn't acknowledge that masking is a daily & exhausting effort, nor does it acknowledge the anxiety and depression that occurs as a result of this constant effort to blend in and stay safe in such a chaotic world.

'The terms “high functioning” and “low functioning” are being used less in favour of “support needs” which I feel is more accurate and less diminishing of autistic people’s struggles.' - Yes - this!

I agree.  I think the powerful have a vested interest in people not seeing Autism as a disability.  After all if it's a superpower then you won't be needing any help or  money.

Get thee to the local chip shop to slave away in the interests of Capital.

I've never seen that show but what a great quote - I'll remember that!

Mark (formerly Spikey) said:

Apart from my wife who does make some allowances, it is always up to me to bridge the gap and it is so tiring

I don't think anything changes even some years into a diagnosis. Autism is,  a communication difference with the majority. This is not going to change. I find adjustments tend to be regarding the sensory aspect,  which is great, but it doesn't change the way people communicate at a fundamental level with you. I don't expect anyone to change and it'd be wrong to do so.

What I find has made life easier is accepting there's this difference for whatever reason and making allowances for this. For myself and the other person. It's nothing personal,  it's a difference between two people. It doesnt mean the communication is easier or less tiring but it leads to feeling calmer in myself. 

I'm from the UK too, Birmingham to be precise.I can attest there is no support.

'Out of their way'= typing/writing lots of info as to why they are autistic. Some, not all by any means, do that. As  for how 'severe' or not. The waters are muddied somewhat in my case in having a comorbid dx of  schizoaffective/schizophrenia .Both ASD and sz/sz-a affect cognitive functioning. Especially in my case when it comes to executive functioning.  Teasing out how much is due to one and not the other is a Herculean task.  What I do know at a basic level is that I was assessed as being classically autistic when it comes to social communication, and at Asperger's level for social interaction. With such a mixed presentation  the Asperger's dx was the one you were given.

That,of course, doesn't happen nowadays. However it doesn't require a great intellect to see that being at Asperger's level for one is different from being at Asperger's level for both.  My sister provided a letter re how I am that  was  more suggestive of my being autistic  than I saw my self as being. Several years before being assessed I had asked her to answer the Online RAADS tool based on how she saw me as being. She scored me significantly higher than I scored myself as being.

Whether support needs are a better way(or not) of assessing things than level of functioning ,there's a very strong element of subjectivity to that. There are no concrete markers that place you as needing  support,substantial support, very substantial support. I think it's far easier to decide whether substantial or very substantial support is needed , than it is to decide between support and substantial support. I find it incredibly difficult to say which of those 2 categories I fit.   Again the waters are muddied somewhat by a psychiatric care plan  that  mentions 'support needed to live independently'. Take away the mental health dx would there still be  the need for the degree of support I currently get from my daughter?

If it was compulsory to give an answer then I'd say 'yes'. The executive functioning difficulties would still be there. My daughter does quite a lot for me, to the extent she was asked by social services whether she wanted to do a carer's assessment - which she agreed to.

I'm the cliche. But a lifetime of masking without knowing what I was doing has taken a big toll. I feel like I am having all my burnouts at once with no end in sight. I'm pretty sure that I didn't go out of my way -  does anyone? What would be their motives? I scored 'severe' for several categories - not just from my own responses, but from what my wife said. I wasn't aware.

People who may have some degree of difficulty/problems, but not at a clinically diagnosable  level.I think I was very different than the average person who was diagnosed with ASD. I didn't go out of my way to increase the likelihood of getting the diagnosis. It was very much a case of WYSIWYG with me. I'm also not one of those who post diagnosis had a blinding revelation that that they've been masking all their life. It's now virtually a post  diagnosis cliche.

Could you clarify what ‘the worried well’ means for me in this context?

Should the 'neurodivergent' equivalent of the worried well be regarded as disabled or impaired? I would say 'no'.

My borough used to have a joint autism and learning support service, but just ended up refusing the autistics. It  was so severe the criteria.

I cut a lot of the eligibity out on the listed criteria.

Eligibity

Has a disability that started before adulthood (18 yrs) with a lasting effect on their development.

• • • Where the LD diagnosis is unclear, further screening (‘Eligibility Assessment’) will be undertaken.

    Non-eligble​

    • Learning difficulty (e.g. Dyslexia, ADHD, Dyspraxia) or Neurodevelopmental Disorder (e.g. Autism) alone (i.e. without diagnosis of Learning Disability)
    • People with high functioning Asperger’s syndrome or high functioning Autism whose cognitive abilities are in the average range or above.

I am very glad now they are seperate servies  Autism and LD. They still don't seem to be offering that much post support and I was surprised I had to pay based on the level of savings I had.

Today, I see a consultant for a another condition. May be asking them to speak to them is best shot now. I thiink borough's may vary with what support they offer.

• Assessment and diagnosis, if you are referred to us by your GP.   
• Support to mental health professionals working with you.  
• Post-diagnostic support, including psychoeducation, advice regarding employment and benefits support, problem-solving and signposting once our post-diagnostic service commences and liaison with other support agencies, if need be.
• Pre-diagnostic support for clients who are on our waiting list to signpost for help while waiting for an assessment.

My experience of mental heath professionals, especially, has been very different. It's only thanks to my daughter's intervention, in demolishing long held, gross, inaccuracies about me,that I now have a healthy relationship with a mental health team. There's been no exchange of heated words in the nearly 7 years I've lived in the SW of England. That contrasts with 40+ previous years of being treated like crap. A far from uncommon happening for those of us who get the mental health diagnosis first, and an ASD dx  more than a few years later.

firemonkey said:

I firmly believe  that autism is a disability

I agree - an autism diagnosis is a disability diagnosis in medical terms.

There are a lot of neurodivergent people who do not reach this threshold though - do you think they should also be classed as disabled?

I think I agree with that!

I'm an autistic heretic in that I firmly believe  that autism is a disability, and comparatively speaking some are more disabled  by it than others. That doesn't mean  that those doing relatively  well, are difficulty/problem free. That's not what I believe,or will ever believe.

Thank you for your response, I agree with you!