Some deeper thoughts

I can see quite much disagreement around the spectrum. There are people, who say that autistic people with lower support needs shouldn't be actually diagnosed with autism. There are people, who get angry, that their diagnosis is not being taken seriously anymore. There are people, who get diagnosed just to have the information/ confirmation of their experience. (And its fine) I think, that it's not only about their lives. The more late diagnosed autistic people,  the more insights into the possible future of autistic children. It's always being talked about autistic children,  but very little about adults. I myself found another reason, to go through the process. Half year ago, I also shared that story here, my daughters teacher in nursery approached me and asked me if I would like to share my experience with one family, who's son is probably autistic.  I told her I'm also only probably autistic, it's not sure yet. But I agreed. I described my early development,  which turned out to be very similar to that boy's, my difficulties at school. I prepared that carefully, to not make my story dramatic, but useful instead. The boy got already diagnosed,  I'm awaiting assessment. His mom, who I talked to, expressed her gratitude for sharing my story and lending her a book about autism. So I think that late diagnosed or recognised people are not problematic (as many say) instead, they can help families to prepare and understand their autistic children better. 

When it comes to disagreements around the "what is autism and what's not" I can only say- it's duty of professionals, who work on it, to categorise this or that condition.  For me the most Important thing is having proper diagnosis,  that describes my difficulties correctly. I used to be misdiagnosed multiple times in my life and also mistreated. I think that the spectrum with levels of support needs make a lot if sense, especially because there are many people,  who tick the same list of symptoms,  but their needs change throughout their lives, and autism is a life long condition. 

If anyone has any thoughts about this topic, can share them with me.

Parents
  • 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 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.

Reply
  • 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.

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