Countdown to diagnosis

Hi everyone, 

I've been undergoing autism assessment by a team of Clinical Psychologists for the last few weeks.  I hear the outcome later today.

I am a woman in my late 50s and the component parts of my ASD assessment are as follows:

  • Initial assessment with psychologist (1.5 hrs)
  • Full developmental history meeting with psychologist (1.5 hrs)
  • AQ / EQ questionnaires (completed at home and handed back to psychologist) 
  • Developmental history (written autobiographical information supplied by me)
  • Developmental history questionnaires (completed by parents/siblings & emailed to psychologist)  
  • Narrative account of issues and challenges (emailed by husband)
  • ADOS-2  with two different psychologists (1 hr) followed by analysis of results (1 hr)
  • Multi-disciplinary Formulation Meeting (professionals only) 
  • Feedback meeting - psychologist + me (1 hr) 
  • Post assessment follow-up sessions - optional (3 x 1 hr)

I first emailed the service provider requesting information on 10 August. 

The Formulation Meeting will be held sometime next week (mid November). This is where everyone in the team gets together to consider all the evidence and reach conclusions about likely causes of difficulties, and potentially helpful recommendations. 

I will get feedback from a psychologist at a meeting next Friday 16 November. 

Although I am paying for this assessment privately, the provider re-invests any profit into providing services for autistic people.

I looked up 'formulation' and it seems this is a psycho-social group decision-making process, combining narrative accounts with evidence derived from the application of ASD diagnostic criteria. This approach aims to reduce the risk of individual bias by promoting creative thinking and collaborative problem solving.  

Needless to say I am looking forward to finding out what diagnostic decision has been reached. It will be fascinating to see if the professionals agree with the conclusions I reached by reading, reflecting, and talking to people in this community!

There are varied formats for assessment so it would be interesting to know what other people's experiences have been. 

Parents
  • I can't seem to edit my original message so I'm adding an update in the thread. The feedback was that I do meet the DSM-5 criteria and I have got a diagnosis of ASD.

    We had a useful discussion about things I can do now to reduce anxiety levels, ways of working on relationship issues, and what to consider in relation to work.

    I am going to get an email summarising today's discussion with the action points we discussed. I also asked for a brief letter confirming my diagnosis I can show to my GP and employer. The full report will follow in a couple of weeks.

    My husband came into the meeting after the first few minutes. I thought it was easier for him to hear things straight from the psychologist rather than me relaying the information to him afterwards.

    I came away from the feedback meeting feeling much more positive. A big part of the strategy is to help me recognise building blocks of anxiety, reduce miscommunication and plan activities to minimise the risk of going into meltdown or burnout.

    Thank you everyone for being so supportive while I have been going through the assessment process.

  • Good to hear you got the answer to the questions you were asking yourself. This will probably get you asking more, but just my take, don't ask yourself too many. You are now diagnosed autistic, just remember, more importantly you are still yourself first. Not being preachy, but from posts here, and from personal experience, there can be a little bit of a fallout. Hope it all is a positive experience!

  • I agree!

    I was going to 'warn' that being diagnosed might have a funny effect in the days and weeks after.

    I compared it a bit like the process of mourning with all the different stages.

    After my diagnosis I completely blanked out. Still haven't recovered.

    That is also due to the fact that you realise what is troubling you and you end up paying more attention to it.

    It's also got an effect in your relationship by the way.

  • It is exactly that! My counsellors always depict this world where it would be fine for me to say 'Hi, I'm autistic so you have to asjust to me!'. Insert roses and daisies and lovely music.

    I've had some odd things said to me in sessions. Situations that I was describing and they gave me some kind of ideal situation that would apply to them. "Why didn't you just walk away, that's always an option", it really isn't when someone hits you in the back of the head. You are hardly going to keep walking away! That was an "Oh....." moment.

    It's a pretty odd thing in my opinion. I've come across a few people who have literally said "You should tell everyone about your condition", like I'm going to introduce myself with "Hey, I'm autistic!". I'm not ashamed of it, and in the right context I would tell someone. In some situations it's as relevant as saying, "I'm a man!", "I'm 1/4 Chinese!", or "I like Monster Munch, specifically Pickled Onion flavour!". It really isn't something that needs to be thrust around. It's part of what I am, but it's not that interesting or relevant, that I'd talk about it all the time.

    Since I've been diagnosed I get more tired of people I've known years thinking it's all important. My mom told her friend and she's known me years, I've done tax forms for her! She talks to me now like I'm 5 years old. I got really angry with her at my aunts. "I bet you struggle with that Cloudy". "Oh *** off, I haven't dropped 50 IQ points since my diagnosis, what's your excuse for being stupid". I just sat there and let her squirm. It's just rude. People said I shouldn't have told her to *** off. I think she was far more insulting. All this from a woman that wanted to set me up with her daughter a few years earlier. Nothing has changed since then in my personality! Lol, sorry, I was just venting! I'd say all of my friends have just treated me with respect apart from one. That's a positive.

    I can try to make the world somewhat easier to manage but am already at my maximum. Can't ask more of anyone really. You need to stay realistic, is my point of view.

    I think knowing your limits is key. I'm learning that. There are some things that I can't do at the moment. It's about managing it, that's exactly what it is, hit the nail on the head there Blank. I think if you push somethings at the wrong time, or go to the wrong place, or both, you could end up totally avoiding something that you might be able to enjoy in other circumstances. It's a case of if, and when with certain things.

  • It is exactly that! My counsellors always depict this world where it would be fine for me to say 'Hi, I'm autistic so you have to asjust to me!'. Insert roses and daisies and lovely music.

    Like really! In the 'real' world (yes, the one and only world), it just doesn't quite work like that.

    I'm the one with the issue here, not the other 99%(?).

    I can try to make the world somewhat easier to manage but am already at my maximum. Can't ask more of anyone really. You need to stay realistic, is my point of view.

Reply
  • It is exactly that! My counsellors always depict this world where it would be fine for me to say 'Hi, I'm autistic so you have to asjust to me!'. Insert roses and daisies and lovely music.

    Like really! In the 'real' world (yes, the one and only world), it just doesn't quite work like that.

    I'm the one with the issue here, not the other 99%(?).

    I can try to make the world somewhat easier to manage but am already at my maximum. Can't ask more of anyone really. You need to stay realistic, is my point of view.

Children
  • It is exactly that! My counsellors always depict this world where it would be fine for me to say 'Hi, I'm autistic so you have to asjust to me!'. Insert roses and daisies and lovely music.

    I've had some odd things said to me in sessions. Situations that I was describing and they gave me some kind of ideal situation that would apply to them. "Why didn't you just walk away, that's always an option", it really isn't when someone hits you in the back of the head. You are hardly going to keep walking away! That was an "Oh....." moment.

    It's a pretty odd thing in my opinion. I've come across a few people who have literally said "You should tell everyone about your condition", like I'm going to introduce myself with "Hey, I'm autistic!". I'm not ashamed of it, and in the right context I would tell someone. In some situations it's as relevant as saying, "I'm a man!", "I'm 1/4 Chinese!", or "I like Monster Munch, specifically Pickled Onion flavour!". It really isn't something that needs to be thrust around. It's part of what I am, but it's not that interesting or relevant, that I'd talk about it all the time.

    Since I've been diagnosed I get more tired of people I've known years thinking it's all important. My mom told her friend and she's known me years, I've done tax forms for her! She talks to me now like I'm 5 years old. I got really angry with her at my aunts. "I bet you struggle with that Cloudy". "Oh *** off, I haven't dropped 50 IQ points since my diagnosis, what's your excuse for being stupid". I just sat there and let her squirm. It's just rude. People said I shouldn't have told her to *** off. I think she was far more insulting. All this from a woman that wanted to set me up with her daughter a few years earlier. Nothing has changed since then in my personality! Lol, sorry, I was just venting! I'd say all of my friends have just treated me with respect apart from one. That's a positive.

    I can try to make the world somewhat easier to manage but am already at my maximum. Can't ask more of anyone really. You need to stay realistic, is my point of view.

    I think knowing your limits is key. I'm learning that. There are some things that I can't do at the moment. It's about managing it, that's exactly what it is, hit the nail on the head there Blank. I think if you push somethings at the wrong time, or go to the wrong place, or both, you could end up totally avoiding something that you might be able to enjoy in other circumstances. It's a case of if, and when with certain things.