Please be aware that assessment does not always = diagnosis

Hi, I've noticed a few people saying that they are going for their diagnosis or going to get their child diagnosed.  I was just wondering if they mean they are going for an assessment, because that does not always equal a diagnosis.  I didn't want people to build their hopes too high or pay privately on the basis  that they believe a diagnosis is certain.  I knew I was going for an assessment but still believed I would probably be diagnosed - now I'm less sure.

Edit:  As SpaceOctopus has now pointed out though - not being diagnosed does not always mean you don't have autism (I hope I have paraphrased correctly - you can read the comment for the specifics of what was said).

- And second opinions can be sought - although the NAS says that they may reach the same conclusion as the first.

  • Hi Adele,

    This is getting increasingly common. We live in an age now of extreme selfish individualism were everyone believes they are experts. Everyone knows better than trained professionals. And all they need to do to self-diagnose is to trawl the internet, take online tests and watch Youtube videos. Autism, like so many things, has become for some people just another accessory, another designer label to add to their collection. Sadly, many people go to as an assessment not for a  professional diagnosis, but to have their own diagnosis confirmed. I have tried to explain many times that it's a terrible idea to go to an assessment just to have your own diagnosis rubber-stamped. There are only two outcomes, and one of them will cause you great unhappiness.

  • For me, having an assessment was about trying to work out if this was the reason why I have suffered from years of mental ill health trying to understand myself - not because I thought autism was fashionable.  I was advised to take online questionnaires by professionals and was advised to read up on the subject and see if I felt it fit by people at an NAS hub.

  • It's really tough, I expect that given the symptoms of autism (special interests specifically), most of the "high-functioning" types will know autism pretty much categorically by the time they go for an assessment. Partly because it takes so long and partly because (I speak for myself here but it probably does apply to most of us) I have a BURNING NEED TO KNOW THE ANSWER.  

    Psychiatrists and doctors etc are fallible.  They are not perfect repositories of the knowledge of their craft.  My psychiatrist, for example, is a consultant, an elderly man who qualified in the 1970s.  Should I expect him to recognise autism in adults? Not really, no.  His specialism is in addiction*.  The best I can do is print out literature and statements and take them to him to read.  Even then he may simply dismiss the option because he may never have met an autistic adult woman in his life.  I may ask for the assessment and not get it because he or my GP gatekeep the services.  I may get the assessment but end up being assessed by a skeptic who doesn't believe in autism in adults or doesn't look behind the mask or simply believe I'm "high functioning" and don't need help.

    I have read every resource I can get my hands on, from Attwood to Handbooks for Women with Autism.  I suddenly started to understand myself after 37 years of absolute awfulness.  Yet I know, I could go to an assessment fully prepared but be asked the wrong questions or have a really good masking day and fly under the radar.

    For me it's not a fashion thing at all, it's finally knowing enough about myself to move forward in my life rather than be perpetually stuck at the bottom of the ladder in a job I'm great at but absolutely despise having to do.  I've been going forward under the assumption of autism and concentrating on my major weaknesses - executive dysfunction being my number one disability-generator.

    Even if it turns out I'm not autistic, I'll still carry on with the adjustments I've made because they help me.

    * He's also the only psychiatrist in the area AFAIK.

  • That's a perfectly valid reason to go for an assessment, Adele: to seek a possible explanation for  difficulties you're experiencing (and because a health professional has suggested a possible cause). That's a standard medical procedure. Investigate all possible explanations for a health problem in order to eliminate them, leaving you with the actual cause.

    Where people run into problems is when they skip the investigation, convince themselves before an assessment that they are autistic, and thus the assessment becomes no more than an official confirmation of what their own diagnosis. 

    The two things are not the same.

  • i didnt know. i mean i walked into an autism assessment expecting to be "stop wasting our time" which would have ruled out autism. They told NO u are clearly autistic/"on the spectrum" 

    this wasnt funny i can tell u.  i couldn't speak for hours it was such a shock. They realised that and became concerned at my sudden inability to speak ! LOL so funny 

    Its because i was raised as neurotypical  I guess.

    anyways,,,,,,," I am who I am" (Zen) 


    You're not saying anything new here. And I agree with everything you say. This should be the primary reason why people go for an assessment: to know the answer to the question.  Where people run into problems is when they skip the professional investigation, convince themselves of their own diagnosis and thus the assessment becomes no more than official confirmation of what they already know to be true. 

    Wanting to know the answer and confirming your own diagnosis are not the same thing. And if every medical professional is as fallible as you describe, then why bother with medical assessments or Doctors at all? Why not encourage everyone to self-diagnose and self-medicate as they see fit?

    Because Autism is a developmental condition and requires observation and assessment can leave it open to  to the ever-growing surge in disability tourism.

  • The same thing happened to me, Aidie. I find this to be true for so many of my autistic friends. It's usually the last thing they ever considered and are dumb-founded when diagnosed. That's why I'm skeptical of some people who behave like professional autistics, convinced they are autistic long before they go for an actual assessment. 


  • And if every medical professional is as fallible as you describe, then why bother with medical assessments or Doctors at all?

    Because they are the Gatekeepers of the Truth! I haven't had much luck with doctors over my life but I am a rationalist.  I can't get help if I don't persuade them to help me.  I have had to diagnose myself in the past (vitamin D deficiency and oh my the difference taking it made!) but I've also had good experiences.  I do tend to trust doctors but not so much psychiatry/psychology.  It's too airy-fairy for my tastes.  Now neuroscience I can get behind!  If only we could just get a brain scan for it, life would be so much simpler.

    Can you explain disability tourism? It's not a term I've ever heard.

  • I will carry on with adjustments too.  I actually bought some children's books on social skills as I didn't have those skills - I won't apply them to the point where I'm totally masking though.  I've been told that the tests can see through masking but I'm not convinced that you couldn't have learnt some skills and still have autism-- I won't say what the tests involve but if you take for example the skill of looking to see if someone is trying to join a circle of people who are sitting on chairs - I learnt to move my chair to let others in after being told off twice at brownie camp - whenever I'm in a circle now, I look for people - but it's due to memories and not some internal ability to be aware of others (although I am glad I learnt this skill.)

  • u can get a brain scan for it.

    Temple Grandin ( the queen of autism) did this.  I mean they could see the issue in her case in that her brain had major unexpected morphological features. 

    i was asked to do an MRI but I have metal in my face so I was not allowed Slight smile