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Some deeper thoughts

Alien0n3arth

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 media is telling people now that people can buy a diagnosis or that people are being over diagnosed for a very mild  trait of autism which many have and can cope with. A diagnosis may be just to know and not serve more purpose. I do find it a bit strange sometimes that some late diagnosed are getting a diagnosis after a liftetime without coming into the attention of services before or having a crisis in their lives before this point. I am a female but for me I was more like a boy growing up a typical tomboy in behaviour. This female type exists but not so much in my case. This over diagnosis and buying diagnosis private must be a myth. It was noted that I had autistic traits in 2015 and when I had testing it was a stringent test. They showed it on TV once someone getting a diagnosis without much difficulty with ADHD private. I think the merging with aspergers is a bit difficult for some people. Many diagnosed late would have had aspergers and not what we think of as classical autism. Hopefully it will settle down. I have read of some people getting sternly buffed of unfairly by some accessors now.

  • in reply to RachelO

    People often go private, because of astronomically long waiting times. There are also people gwtting their family members with classicsl autism assessed private. It is expensive,  but many people who work can actually afford it. It costs more or less same price of holidays overseas calculating prices of flights, hotel, etc. People have money for holidays, so having money for a private diagnosis is not impossible. I hate traveling, I hate flights and crowds etc. So I don't spend my money on that. Neither on clothes fashion etc. Neither on alcohol or cigarettes. So I have savings and this cosy of 1000 euro is for me absolutely affordable. Because if this I can be assessed with the evidence I have of me having differences and difficulties since my early childhood, I don't need any informant from my family (my husband is enough) and I have to wait only several months, not years. Since now it's 5 months ahead. I already filled out the tests she asked me. Now i only habe to repeat blood tests. Finding a doctor who would offer a date was not easy though. They are mostly fully booked.

Reply
  • in reply to RachelO

    People often go private, because of astronomically long waiting times. There are also people gwtting their family members with classicsl autism assessed private. It is expensive,  but many people who work can actually afford it. It costs more or less same price of holidays overseas calculating prices of flights, hotel, etc. People have money for holidays, so having money for a private diagnosis is not impossible. I hate traveling, I hate flights and crowds etc. So I don't spend my money on that. Neither on clothes fashion etc. Neither on alcohol or cigarettes. So I have savings and this cosy of 1000 euro is for me absolutely affordable. Because if this I can be assessed with the evidence I have of me having differences and difficulties since my early childhood, I don't need any informant from my family (my husband is enough) and I have to wait only several months, not years. Since now it's 5 months ahead. I already filled out the tests she asked me. Now i only habe to repeat blood tests. Finding a doctor who would offer a date was not easy though. They are mostly fully booked.

Children
  • in reply to RachelO
    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".

  • in reply to RachelO

    Don't forget, you can have traits but to get actually diagnosed, you have to be having difficulties in life. 

    Dsm:

    • criterion D: symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning

    ICD:

    • characteristics result in significant impairment in personal, family, social, educational, occupational or other important areas.

    Cited from https://www.autism.org.uk/advice-and-guidance/diagnosis/assessment-and-diagnosis/criteria-and-tools-used-in-an-autism-assessment

    So those that are getting diagnosed aren't doing it for fun. It's caused them real difficulties with life and they are just trying to understand themselves. That coupled with suicide rates being so terribly high, it's not like it's a club you want to 'buy' yourself into unless you are suffering and need the understanding to help yourself not fall apart.

  • in reply to Alien0n3arth

    Thank you, . Most trusts in the UK have stopped allowing people to go a private pathway through the NHS. Some of the questions are left out online as they cannot do them. I believe it is genuine, but it is not exactly the same as in person, you would like to think if they are permitting it is acceptable.  This website has a document about it a pause to private through the NHS. . May be they are clamping down some way as is there a backlog and perhaps an increase, I am unsure. People can go private if they choose not through the NHS.

    www.autism.org.uk/.../our-response-to-autism-assessment-waiting-timesse, .

    Some of my family have traits, but they never needed help in their lives so I tend to use that thought. I did have issues with the NHS and mental health and overwhelming in my life.