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Looking for advice...and maybe some reassurance

Emma

My name is Emma, I'm 30 years old and I think I may be autistic.  I have spent my entire life feeling different, out of place, not a "real" person.  I had never considered I may be autistic until meeting another female with autism and learning more about how it presents in females. 

I have since done extensive research on autism in females, diagnostic criteria and done some of the assessment tools I have been able to access.  All of these have indicated to me there is a high likelihood of autism.  I should also mention that I have a background in adult nursing and although I don't have a background of looking after people with ASD, I feel confident enough in my education and background to know how to follow assessment tools and have enough clinical suspicion to say that I meet the criteria for diagnosis. 

I guess I'm just scared to speak to a healthcare professional about this.  I have struggled for a long time with my mental health and I don't have a lot of trust in doctors in general.  I feel like they will automatically dismiss me, as they have done with so many other things. I find GP appointments really scary and actually quite intimidating and I wonder if I sometimes don't always get my point across to them in the most coherent way (especially because I normally visit my GP when my anxiety is very high and my brain is all over the place).  I wondered if anyone had any advice about their experiences approaching a their Dr for a referral to ASD diagnosis services?  Have people found it helpful to write things down in form of a letter or something like that? I feel like I'm pretty coherent when I'm writing so would be able to get my point across much better on paper than in person. 

I also wouldn't mind some reassurance that I'm not making all this up in my head?  The more I learn about autism, the more I feel at home. I feel comforted by the fact there are other people out there like me and I'm not alone.  I have never been able to explain why I have felt different my whole life and why life has been one big confusing mess of an experience for me until I learned more about autism.  Have other people felt this way as well? 

Thank you for reading 

  • Hi Emma,

    So get what you are saying about your GP.  Yes they are dismissive, not because they don't care, but because the communication differences when we try to describe our experiences are not understood by them.  Often our physical experience of all sorts of things can be different.  they don't always understand when we try to describe either physical or emotional matters, don't get when we are in pain, don't get all sorts of things and we can easily end up mistrusting them.  You really aren't alone in this.

    And the finding it easier to write is a classic autistic feature.  because we have time to process and express what we want to say this is easier for many of us, especially with doctors.

    Indeed, when I first realised I was autistic I wrote to my GP, rather than make an appointment.  I sent him the results on my AQ50 and a letter detailing all the reasons why I thought this was the explanation behind my experiences and the reasons why I felt a diagnosis could help me.  He made the referral without me having to see him in person.  I'm terrified of GPs and I only see them when a physical examination is necessary.

  • If you feel different it's probably because you are. My experience is that I felt different but couldn't find anything tangible. It was just "there" throughout my life.  I don't know any non autistic people who have looked as far into the possibility of being autistic as myself and other people on the forum. They don't feel fundamentally "out of step". Others have offered advice about approaching your GP.  Common experience including my own is that there is little to no help available if you are diagnosed as an adult. 

  • in reply to Emma

    Yes, definitely. Also, make a list of your autism-like traits and experiences going back to childhood. If you search online you will be able to find the diagnostic criteria for autism, ICD-10 and DSM-5, if you can fit your traits into the criteria it will strengthen your case even further. To get a diagnosis, your traits have to have a negative impact on your day to day life. This can be through things like sensory sensitivities making things difficult for you in supermarkets, being exhausted by social interactions, misunderstanding people and them misunderstanding you, being constantly in a state of anxiety etc. etc. 

  • The way I did it was with the askmygp online thing at my surgery.

    I explained my "symptoms", long term mental health struggles, and importantly how my life has been affected ,(this was hard). (Also that it has been there since childhood). I asked for a referral outright (not sure if this is the best way). You can go through the DSM and list the things that match, for symptoms. 

    I'd look at it as making it as easy as possible to see youeet criteria.

    My gp asked me to fill out the AQ 10 and what it would mean to me were I diagnosed. I scored below the threshold so included my score for the AQ 50 (just over threshold). She referred without even seeing me in person.I would expect it would have been more difficult in person. 

    Spob

  • I always think it’s easier to go in with some explanations of how this affects you, and to what degree. Saying I think I might be Autistic, and presenting them with tests results done online aren’t enough these days. Especially if you are able to articulate yourself. Some GPs dismiss you at this early stage. More for the sake of their budget than anything else! Stand firm, or simply go down the private route.

    Before I realised I was Autistic I felt like I never quite fit in, I found other people boring, conversations pointless, and I disliked social situations immensely. I loved being on my own, or in my home, and simple things were difficult for me, yet other things I excelled in. I always acted like the person I was supposed to be in any situation, and I hoped others couldn’t see past it.

  • in reply to Martin

    Hi  Martin, thank you so much for your guidance.  I did actually do some of those tests online and I scored quite highly on them all. Is it reasonable to take these results to my GP to strengthen my case for a diagnosis? 

  • My advice would be to take some online autism tests. AQ10 and AQ50 (sometimes called just 'AQ') are the most commonly used by clinicians in this country, but the RAADS-R is the most definitive. They can be found here: embrace-autism.com/.../
    If you score in the autism range it will give you more certainty about following up on a diagnosis.