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Seeking perspective: Nervous about my June assessment after an NHS rejection

Sheryl

Hi everyone,

I'm looking for some support. I have a private autism assessment coming up soon after being rejected by the NHS (ANDS). They felt I didn't fit some of the more "classic" traits, particularly rigid routines, and many of my difficulties were attributed to anxiety based on my GP records.

This has left me with a lot of doubts about whether I'm actually autistic. While I do experience anxiety, I don't feel it fully explains my lifelong sensory issues, social difficulties, executive functioning struggles, and difficulties coping with change.

I'm also a woman, and I've wondered whether female presentations of autism were fully considered, as I've read that autism in women can sometimes present differently from traditional stereotypes.

A few questions:

• Has anyone been diagnosed without obvious rigid routines or stereotypical special interests?

• If you're a woman diagnosed later in life, were your traits ever mistaken for anxiety or something else?

• What should I expect during an adult autism assessment, and is there anything you wish you'd known beforehand?

Any advice or experiences would be greatly appreciated. Thank you.

Parents

  • My traits were misdiagnosed as Borderline personality disorder due to the emotional Dysregulation (this is mainly someone messing up my "plans" which can be interpreted as rigid routines). I also suffered from anorexia from age 16 after two "friends" rejected me (now I understand I must have been rude to them or something didn't align with them). 

    That's when my masking came off apparently. I developed the special interest of calorie counting, exercise (8-9 hours each day) and being skeletal. Nobody could mess up with my strict routines, noted in detail by detailing each activity hour by hour. I weighed 28kg at my lowest. That was for several until I developed bulimia. Another strict routine, etc 

    It's now recognised that anorexia nervosa is many times how autism presents in girls after the controlled "safe" environment of primary school.

    Alongside the anorexia, bulimia I was diagnosed with anxiety and depression too.

    As my family never knew my real reason for my meltdowns and "rude" behaviour, they kept reminding me my whole life how much I ruined their lives so I also developed PTSD and was diagnosed with it after the family feud after my father died and inheritance became an issue. So I was referred to CBT and in there the clinical psychologist determined I had issues maintaining relationships (I already had this documented in my reports of other diagnoses). He also noted I had a strong sense of justice and followed rules.

    However, he didn't diagnosed me with anything but documented our sessions.

    It's now that I know the reality and why no therapy ever worked. No antidepressants etc. I also have ADHD so that also contributes to difficulty diagnosing because some traits are similar.

Reply

  • My traits were misdiagnosed as Borderline personality disorder due to the emotional Dysregulation (this is mainly someone messing up my "plans" which can be interpreted as rigid routines). I also suffered from anorexia from age 16 after two "friends" rejected me (now I understand I must have been rude to them or something didn't align with them). 

    That's when my masking came off apparently. I developed the special interest of calorie counting, exercise (8-9 hours each day) and being skeletal. Nobody could mess up with my strict routines, noted in detail by detailing each activity hour by hour. I weighed 28kg at my lowest. That was for several until I developed bulimia. Another strict routine, etc 

    It's now recognised that anorexia nervosa is many times how autism presents in girls after the controlled "safe" environment of primary school.

    Alongside the anorexia, bulimia I was diagnosed with anxiety and depression too.

    As my family never knew my real reason for my meltdowns and "rude" behaviour, they kept reminding me my whole life how much I ruined their lives so I also developed PTSD and was diagnosed with it after the family feud after my father died and inheritance became an issue. So I was referred to CBT and in there the clinical psychologist determined I had issues maintaining relationships (I already had this documented in my reports of other diagnoses). He also noted I had a strong sense of justice and followed rules.

    However, he didn't diagnosed me with anything but documented our sessions.

    It's now that I know the reality and why no therapy ever worked. No antidepressants etc. I also have ADHD so that also contributes to difficulty diagnosing because some traits are similar.

Children
  • in reply to Yosoy

    Was you diagnosed with autism and ADHD in the end, i cannot tell from what you wrote if you had a self diagnosis or professional..

    Btw, I also developed an eating disorder at 15 and have been inpatient for anorexia a number of times in my life. 

  • in reply to Yosoy

    Hello.

    It must have been quite confusing living inside this without an overall understanding or framework to explain your experiences.

    Could I ask if you still have eating issues? Does it go away or transfer to something else, or is it always in the background? Please don't feel pressured to answer. I am just curious because I know of a few other people with similar challenges.