ASD assessment says ASD traits, not enough for a diagnosis

Hi,

I am a female in my 30’s. I have been waiting for a ASD diagnosis for years. I eventually went privately and it came back that I have ASD traits, but not a diagnosis. The bits that I didn’t fit on where the structure and routines (I am very disorganised so I find it hard to stick to routines even if I wanted to).

I was diagnosed with dyslexia 5 years ago, my reading comprehension was in 5th percentile but perceptual reasoning in 92nd percentile. I had the same thing with a speech and language assessment showed huge differences in my scores (9th to 95th percentile). The speech and language therapist said my profile was similar to her ASD clients (I had poor skills getting the ‘gist’).

I was also diagnosed with ADD 3/4 years ago but the psychiatrist would not refer me for an ASD assessment (he said I was functioning too well because at the time I had a job).

But I have been working with an ASD mentor recently and she is really really helping me understand things (like what I am missing) and now I feel really disppointed and kind of like a fraud that I don’t have a diagnosis.

The main things that I am struggling with is that my mind is blank a lot. Like when I was working, someone might ask a question and my mind is blank and in meetings I could not contribute because they talk in such broad language. I need ALL the detail to understand and I need a picture. Like I went to an exercise class and the guy said ‘first class’ so I thought of a first class stamp, a first class train and then a membership system. I did not understand he meant ‘is this your first class’. I think very literally. And in films, my friends discuss all the complex characters interactions afterwards and I don’t see them, I only see what happens. But I notice different things, like I notice peoples patterns, like if they are not their normal self because of how they text or how much they are in touch or other things. I notice if their movement is different or their voice is a different speed. 

Is this an ASD thing? Does everyone with ASD follow strict routines? 

I did not know I was neurodiverse until my late 20’s so I also did what I thought I was meant to do and was social ish. I have lived in shared housing out of financial necessity not because I wanted to. 

They also said I don’t have a special interest but I tend to get obsessive about the thing I am doing. Like I love searching for houses on Zoopla and I might spend 2/3 hours doing this. Or when I was working I get obsessive about a tiny part of the work that is not important but I can’t move on until it’s solved. 

I have always lived with people until recently and it takes me a while to get absorbed in and out of things so I always felt stressed with so many people around so I felt like I havn’t had space to focus on my interests. I am too busy exercising or doing something to keep my anxiety down.

Am I not really autistic? The ASD traits is not helpful to me. 

Parents
  • you sound pretty close to autistic to me but I am not an expert. I divide between ASD and ADD has to be by the experts. Stay in the NHS waiting list and see what they say.

    I am very anti-social. I went for a diagnosis thinkin it was antisocial disorder which can be fixed but came away with autism !

    autism is more hard wired so the diagnosis is quite serious. It cant be fixed and has a list of co-morbids eg anxiety, depression, suicidial thoughts, eczema, OCD thoughts. severe panic attacks.  Autism also has shutdowns ( me ) and  complete meltdowns.

    On reflection, getting a diagnosis was/is harmful to me in the world of employment / to getting a new job - most employers dont want the extra  bother.

    if u r high functioning autistic, which i think u r, there is probably no support after your diagnosis 

    Sit and wait for your NHS diagnosis dont tell them about your private one as that will influence them. Emphasize your obsessive to detail/ small things.

    do you have any relatives who autistic ? eg my mum probably is , My uncle was really odd, and my nephew is a classic case of autism ( aircraft obsession 6 hours a day ) My daughter probably is, but she doesnt think a diagnosis achieves anything !

    Having a job should have no bearing on your diagnosis. It was one of my reasons for seeking help was my major fights in work where i would lose jobs ( highly antisocial, not understanding things, different learner, and refusing to change direction by managers ), and i came out as ASD.   I crave routinue at work. I create routinues all the time and now fight their creation as they impact my life, ability to be flexible/ multitask.

    In my opinion, Your ADD diagnosis is so close to ASD as to make no real difference.   I wonder did the ADD diagnosis cloud further decisions/diagnosis for you ?

    Bottom line : me thinks, sit and wait for your NHS diagnosis, unless you have serious anxiety / increasing depression which could make your life hell / end short.

    if u r rich/well off/really determined,,,,  get another private diagnosis.by an expert on female autistic diagnosis as there are very subtle but important differences between men and women eg Lorna Wing centres in England.

    Lorna Wing Link

    Heart

Reply
  • you sound pretty close to autistic to me but I am not an expert. I divide between ASD and ADD has to be by the experts. Stay in the NHS waiting list and see what they say.

    I am very anti-social. I went for a diagnosis thinkin it was antisocial disorder which can be fixed but came away with autism !

    autism is more hard wired so the diagnosis is quite serious. It cant be fixed and has a list of co-morbids eg anxiety, depression, suicidial thoughts, eczema, OCD thoughts. severe panic attacks.  Autism also has shutdowns ( me ) and  complete meltdowns.

    On reflection, getting a diagnosis was/is harmful to me in the world of employment / to getting a new job - most employers dont want the extra  bother.

    if u r high functioning autistic, which i think u r, there is probably no support after your diagnosis 

    Sit and wait for your NHS diagnosis dont tell them about your private one as that will influence them. Emphasize your obsessive to detail/ small things.

    do you have any relatives who autistic ? eg my mum probably is , My uncle was really odd, and my nephew is a classic case of autism ( aircraft obsession 6 hours a day ) My daughter probably is, but she doesnt think a diagnosis achieves anything !

    Having a job should have no bearing on your diagnosis. It was one of my reasons for seeking help was my major fights in work where i would lose jobs ( highly antisocial, not understanding things, different learner, and refusing to change direction by managers ), and i came out as ASD.   I crave routinue at work. I create routinues all the time and now fight their creation as they impact my life, ability to be flexible/ multitask.

    In my opinion, Your ADD diagnosis is so close to ASD as to make no real difference.   I wonder did the ADD diagnosis cloud further decisions/diagnosis for you ?

    Bottom line : me thinks, sit and wait for your NHS diagnosis, unless you have serious anxiety / increasing depression which could make your life hell / end short.

    if u r rich/well off/really determined,,,,  get another private diagnosis.by an expert on female autistic diagnosis as there are very subtle but important differences between men and women eg Lorna Wing centres in England.

    Lorna Wing Link

    Heart

Children