Some deeper thoughts

Yeah, now you mention it I think I was a score rather than a level.

I Would not go for assessment online. I'm going private, but I'm paying for proper assessment and not for paper with "autism" written in it. I want to be observed and assessed correctly. If I have autism, then I want to have this diagnosis and written, what are my traits and difficulties as observed by the professional. If it's not autism, then I wanna know what and go further for help. I don't believe, that someone who observes me on a camera on teams can assess properly. They can't see my eye contact in person, they see only what the camera shows, so if I'm stimming with my fingers and it's off lens- the professional will not see it.

The situation what is going on in the UK is quite difficult to understand. I wrote that many trusts had paused right to choose pathways through the NHS and that was based on the AI write up-but I would change that to some. It certainly startled me a bit to read that. i don't know how widespread the problem is, but there is a lack of funds at least for some trusts.

I am beginning to think that if you want to use Right to Choose in the future through the NHS that you should wait 2 years minimum. Some children are waiting 7 years to be seen on the NHS and that is not right. Some people are promised 6 months through right to choose and then could be distressed come that 6 months and they don't get it. It doesn't seem right to me. If you want to not wait you can go private.  I know one mother who has a son who was waiting at least 3 years in a special school to be seen and she ended up taking her son out of there and sending him abroad for education fed up with the system. He is back now for his GCSE year.

We have to remember that autism is a spectrum,  

The government is looking at why there is a growth in ADHD and autism right now. It will be interesting to read their findings. I don't know if autism or adhd could be diagnosed online before COVID. If not perhaps they could go back to face to face only. This is the information from their website. The 2 psychologists who did my tests in person were experts in the field and not general pyschologists.

www.gov.uk/.../review-launched-into-mental-health-autism-and-adhd-services

I wrote on another autism board last year about the differences between online and in person tests and the way you are observed is not quite the same. Here is what I wrote.

www.autismforums.com/.../

I was diagnosed before the ADOS test of any module was around, I think that maybe why I get confused sometimes

My home county is a very affluent area, many celebrities live locally, there are as many private schools as state run. Some of the private schools are ruled by the parents cheque books. My previous job was a coach driver at Grammar Schools and Secondary. Two different worlds. The Grammar School will remove the problem as stats are all important, the Secondary School has to school all with no rich parents.

Yes, the class issue definitely exists. Once I saw a comparison of autism and adhd diagnosis in two US states. I don't remember which one, but one of them had higher income, other was poorer. And the state with higher income had significantly higher number of diagnosis. Is it that there are much more ND kids and adults? Of course not. These people have better access to medical services and it's also about the quality of these services. 

Roy said:

I can really empathise with parents of autistic children with very high support needs, the constant battle with authorities and 24 hour care of often a non verbal child must be exhausting. 
I’ve seen FB groups with parents venting their anger and frustration when they see many people with lesser needs being diagnosed as autistic. Most are able to work and have a near normal life, they must get very frustrated

I agree, I think that the levels of support should be clear and assessed together with the diagnosis. I saw a video on YouTube, of a profoundly autistic man and his mother. The lady said, she doesn't care about the destruction at home anymore. She had a problem, who would take care of him and when would she had to give him to care. That man was about 30, his mom around 60. She was exhausted is understatement. So I myself got angry at that point- why should I get the same diagnosis as this man since I can relatively normally function, when comparing to him. Germany still operates with ICD-10 criteria,  so I would receive the Asperger Syndrome diagnosis. This would male it clear, that my abilities and needs are different from someone with high support needs. 

I don’t have itemised scoring, I imagine your results are a score, not an overall level of autism. 

It is interesting how some trusts do it differently.. I am glad that you got your diagnosis.  I will add a bit more. I did ask this question before, what result scores overall correspond to what levels and I didn't get an answer. They did tell me  their opinion but I was curious  more as I had a mixture of results indicating 2 in some areas and mainly 1 in others. I was like 1.5 lol.

Mine is an NHS assessment with ADOS-2 module 4. I have scores for particular tests, a threshold for each score and a total score, I had no level given on the results, just a diagnosis of autism. I shouldn’t say just.

Oh didn't you know that autism along with many other things you were born with or acquired and can do nothing about, all go away in a puff of smoke the minute you turn 18? Well if you talk to adult services once you turn 18 they're amazed, stunned and bewildered that you've come to them with "paediatric" condition and instead of reading your notes and continuing care and accepting your diagnosis you have to do it all again. They wouldn't do this with things like cancer, a broken leg, the need for kidney dialysis, so why do it with a learning difficulty or a mental health problem? I can see the point of having your needs reassessed every few years as they can change.

I also can't help but wonder if there's a class issue with who get diagnosed with what and when? I remember when dyslexia was first widely recognised and it was always middle class kids with very articulate, well off professional parents who got the diagnosis, everyone else was just thick?

My autism ADOS scores with the NHS had individual levels scores for communication, social interaction, repetitive interests and others but no overall level but just a score. I like it this way, in some areas you may be more severe and some others less so. I found it helpful. I did ask overall what level they would say I say I was and they told me to. Being given a level for some allowed me to get OT help for sensory issues being level 2 and above on that. I shown one example, I don't know if yours was the same.

I can really empathise with parents of autistic children with very high support needs, the constant battle with authorities and 24 hour care of often a non verbal child must be exhausting. 
I’ve seen FB groups with parents venting their anger and frustration when they see many people with lesser needs being diagnosed as autistic. Most are able to work and have a near normal life, they must get very frustrated. Some online content creators make autism seem almost fun.

No level of autism is given in the UK, I don’t know where I would fit in with levels, my childhood was mainly the 1970’s, very little was known about autism, other terms were used and people were institutionalised  often forever. I kept my head down and stayed under the radar. Anything from the norm was seen as bad behaviour and poor parenting.

The DSM-5 is from the USA, levels are still used, from my understanding insurance providers use them to cost levels of care.

Level 1 still states, requires support . I don’t know where I would be without my wife, we met at an early age, she makes sure things are paid, insurances get renewed. it became obvious at my assessment that I most probably couldn’t live alone, not because I’m lazy but because I just couldn’t cope, I was quite shocked. Instead of a level of autism, maybe it would be better listing what a persons support needs may be.

Autism changes throughout a life so much, I’ve had periods when getting out of bed and getting dressed has been a win for that day, the outside world doesn’t see that. Periods of being non verbal, no one sees that either. We are very good at not telling anyone when we are suffering, we sometimes don’t have the language to explain it. Sensory challenges can change as well.

A diagnosis of autism isn’t given easily, it is a lifelong condition, unfortunately for late diagnosed people, a lot of damage has already been done. By the time most get diagnosed,  they are exhausted and at a very low ebb. I’m nearly a year in from diagnosis, I’m really still scratching the surface of autism.

Educating the world about adult autism would be a big help and not trying to cure it, it’s still too stigmatised, I said the other day that the world only sees autistic children, I wonder where the think we go to ?

You can get married, work and be autistic and female to I think.  You can even exist for most of your life without concerning mental health issues and then have a breakdown and be diagnosed with a mental health issue. Although, you would expect someone to have some struggles in their life even if they were not getting help from the NHS or private. This seemed to happen to Rachel Noel that she seemed to go without any significant health struggles as none was noted in her story and then in middle age then turn up at A+E with a breakdown form mental health issues and then end diagnosed with several conditions.

RachelO said:

Some of my family have traits, but they never needed help

Yes, it's my mom. She thinks I'm just like her so why would I need help. I was suicidal at few points in my life and I feel totally misunderstood by her. Fir her almost everything about me is normal and just me. We are in some ways a bit similar,  but I'm far from being just like her. It's only her opinion. Her opinions are so strong that she tales them for objective truth and refuses to consider being maybe wrong. That's why she refused to provide me with help. Although I was not the only one crying and asking for help. Her second husband told her there is something wrong with me and she should take me to some psychologist, her friends told her too. But her answer was always "it's just her, she is like this".

I was late diagnosed ASD simply didn't exist as a diagnosis when I was younger, when I was diagnosed it was still quite unusual for women to be diagnosed. I'd had lots of problems growing up and all through my life, looking back it was obviously ASD, but because of lack of knowledge or acceptance, I went down the usual female route of ever increasing gynaecological and mental health causes. I wonder if many of the doctors who treated me would still think having a baby would make me less ASD? 

Thank you, that was helpful.

There is a pause in some trusts about choosing right to choose pathway. I don't how many have taken this up. This article states that in Cumbria they have taken a pause. I have read people stating this recently that their GP is not allowing them to fund right to choose on mumsnet forum.

https://www.pulsetoday.co.uk/news/clinical-areas/mental-health-pain-and-addiction/gps-raise-alarm-over-icb-limits-on-right-to-choose-adhd-and-autism-assessments/

This is what led to it-

"Right to Choose Limits: The "Right to Choose" pathway, which allows patients in England to seek faster assessments from alternative providers, is under immense strain. Many ICBs are enforcing strict "activity plans" or pausing this route entirely because they have run out of designated funding. "

I am only the poster I don't come up with it, they seem to be going against online assessments-

theautismservice.co.uk/.../

Does it mean, that they don't allow right to chose anymore? I'm not in UK, I'm living in Germany. Here it's a bit different.