Referred to autism assessment - lots of questions

Hi everyone,

I'm 32 and was diagnosed with inattentive type ADHD a couple of years ago. I was referred to a psychotherapy assessment a few months ago to deal with my anxiety, but the team there referred me to do an autism assessment instead. Having spoken to several different healthcare professionals/therapists, I feel pretty certain that I'm on the spectrum, but I'm having a hard time processing it all.

When speaking to the psychotherapy team about my struggles, I felt certain autism plays a significant role, but when they asked me to fill in the screening form (AQ-50 I think) I had a really hard time relating it to my lived experience. The best way I can describe the mismatch is that I feel like I understand social cues and relationships, but it takes a lot of conscious effort/energy and I worry constantly that I'm either misunderstanding others, or that I'm being misunderstood myself. The questions in the screening form felt either far too specific (e.g. "I am not very good at remembering phone numbers.") or too vague (e.g. "I find it difficult to work out people’s intentions.") to relate to. I also didn't feel like they capture the anxiety and exhaustion - which is all I really care about if I'm honest. Can anyone else relate to this? 

It's been a few weeks since I was referred, but it has suddenly started feeling overwhelming. I'm not sure how long the NHS wait list for autism assessments is now, but my daughter had to wait ~18 months so I suspect it will be a while. I was told to start living with the assumption that I'm autistic, but I'm not really sure how... I'd really appreciate any perspectives or advice from other late diagnosed people! 

Parents
  • Good morning from America, jonliled!

    34 here with AuDHD as well. I was diagnosed ASD around 30. I also have a daughter (age 8) with Autism and one (age 5) without.

    Yeah, I get what you’re saying about there being some mismatches with standard Autism tests. Autism can present itself in a wide variety of ways. Some struggle with social cues, others do not. Some struggle with sensory input, others do not. It sounds as if you are very excellent at masking in social situations, so on the surface you may be able to handle social cues, but it is exhausting for you. It’s hard for an Autism screening test to determine that.

    If you have any particular questions or concerns that you would like to discuss, I’m totally open to diving a bit deeper. Best wishes!

Reply
  • Good morning from America, jonliled!

    34 here with AuDHD as well. I was diagnosed ASD around 30. I also have a daughter (age 8) with Autism and one (age 5) without.

    Yeah, I get what you’re saying about there being some mismatches with standard Autism tests. Autism can present itself in a wide variety of ways. Some struggle with social cues, others do not. Some struggle with sensory input, others do not. It sounds as if you are very excellent at masking in social situations, so on the surface you may be able to handle social cues, but it is exhausting for you. It’s hard for an Autism screening test to determine that.

    If you have any particular questions or concerns that you would like to discuss, I’m totally open to diving a bit deeper. Best wishes!

Children
  • Thanks for your reply! I would love to hear about your diagnosis/post diagnosis experience (if you are comfortable sharing)!

    You mentioned masking - did you find that becoming aware of it made it harder? Have you seen a change in yourself since your diagnosis?

    I feel like I know I need to change things in my life to mitigate the exhaustion, but I don't know where to begin...