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. 

  • In the past I have always resisted taking prescribed medication for anxiety, which was a bit ironic given that I used alcohol to relax or enable me to be more social.

    I finally gave in after my diagnosis and started taking Propanalol. It doesn't replace the other strategies - pacing myself, trying to keep stress levels below meltdown point - but it makes it easier for me to stay calm and relaxed.

    In spite of all this effort I'm still having flash points and times when everything feels like ****! Generally though life seems less chaotic and my head feels clearer. 

    Sensory stuff is still heightened so even though Propanalol switches off some of the signals I am still affected by anxiety. I am trying to address the underlying causes of angst as well as masking the symptoms. 

    Prior to my diagnosis I'd assumed everyone struggles with this kind of stuff. Now that I know some things really are harder for me, it actually makes things better! 

  • Glad to hear you had a good time!

    Makes a lot of difference being self aware and conscious of the need to manage stress and energy levels.

    That's something I'm struggling with at the moment. I've got anxiety, and for about 20 years I was basically drunk or high to manage life. I'm sober now, but it's a bit of double whammy. I know the things that stress me or overload me, but I've also lost my "toolkit", so to say. Sometimes I get a bit too vigilant. I'll get there but, ***, it's hard at times!

  • I agree that it is all very tiring. I'm glad that the process is over for me now. It was all worthwhile but quite draining. 

  • Thank you! Initial elation subsided a little as it's tough deciding what to do to reduce stress at work.

    Still very glad I got my diagnosis at long last and I am looking forward to reading the full report in a few days. 

    It has been very tiring and that's something worth considering for anyone else deciding to get assessed. 

  • Not sure if congratulations is quite right, given what an exhausting thing it was to do all that, but...congratulations! It's great that you are coming away feeling so positive.

  • How disappointing to have ended up in limbo with no clear way forward. Here is an extract from the NICE guidance on identification and initial assessment of ASD: 

    _______________________________

    'Identification and initial assessment of possible autism

    1.2.2 Consider assessment for possible autism when a person has:

    one or more of the following:

    persistent difficulties in social interaction

    persistent difficulties in social communication

    stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests, and

    one or more of the following:

    problems in obtaining or sustaining employment or education

    difficulties in initiating or sustaining social relationships

    previous or current contact with mental health or learning disability services

    a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder.'

    ________________________________

    In my early adult life I would probably not have met these criteria, but I most certainly do now. It is a shame that things have to start to unravel before autistic people can be diagnosed. 

    Do you satisfy the criteria above? If so then getting a second opinion might be worthwhile.

    Private diagnosis is also an option. It's not cheap but an initial assessment (around £150) should confirm whether or not you would fulfil criteria for ASD. If you do opt for this make sure your private diagnosis meets NHS / NICE standards. 

    Good luck with whatever you decide to do next. 

  • good to know all this.

    i've had time to digest the initial assessment and the 'rejection' of not having it taken any further under the NHS.

    They say it's because i can cope etc, and although I do show some autistic traits, it's not enough to go further.

    I feel like i'm stuck in no mans land atm, and am thinking of going private.

    So if anyone can point me in the right direction to someone (Suffolk/Essex borders), it would be appreciated.

    Just feel i need to know 100%, as I may well be coping now, but what in 10yrs time when my situation changes, and im not working fulltime... and need support.

    TIA.

  • Wow, that seems far more complicated than my assessment last year. I just filled in some forms, waited four months got an appointment which was quite informal & lasted one hour, but was told that I was too complicated, so they would need a followup appointment. Waited a further four months, had another quite informal hour long appointment with a different consultant, at the end of which I verbally received a positive diagnosis. It took them another four months to put it in writing though, so from start to finish it was about twelve months.

    I didn't have to do any of those weird childish storybook things either, because at the start of the first appointment I joked about hoping they weren't going to make me look at anything dumb like Frogs on a Lily Pad. I was mildly scolded for having read up on the assessment in advance, but after that they just seemed to adlib everything. It was ridiculous to assume that I wouldnt have checked though, I am in my mid fifties not a child & always check everything on the internet first, as I like to be prepared.

  • Thank you! We had a lowly time. I took some quirky objects in my handbag for my grand daughter to look at. That was a good distraction for both of us. I sat in the corner where there was extra space. It was very noisy but I popped out to the campervan a couple of times to fetch things which gave me a break. Sat quietly when we got back as it was a very long day - six hours in the campervan there and back. First social occasion since my diagnosis. Makes a lot of difference being self aware and conscious of the need to manage stress and energy levels. 

  • Yeah, it's best to just see how thigs pan out, and not let autism affect every aspect of how you approach your thoughts and actions. Just try and still be the same old you if it is time. Sounds like you picked a nice activity to put things out of your mind for a while. It will be hard comimg to terms with things but after so long coping with it, I think you know what it affects, best not to let it bleed over into things that it never did, imo anyway.

    Hope you had a great day out!

  • Very sound advice! I am seeing my two adult children, their partners and my grand daughter later today, so I'm going to try and switch off my hyper focus on autism and enjoy having lunch with them. It's a dog friendly pub which is great as Izzy will be there too. She actually played for a few minutes last night, wagging her tail while she did so. Izzy first came to us on 25 August so it's taken about 3 months for that to happen. She's snoring away in her little bed now. I love having her sleeping next to me. When she first arrived she would get into a panic in the night and I could just reach down and stroke her for reassurance. These days she is sleeping quite well. I have invented some puzzles for her to solve when she gets bored and that is helping to settle her down. I love watching her solving problems like how to get a treat out of a cardboard tube! 

  • Now exhausted with far too many thoughts crowding my brain. 

    It's useless doing that to yourself. You sound like you've got it in the right hands, and there's nothing you can do about it. I do that to myself sometimes, more than I'd like, but I have a rule now. If it's outside of office hours, or I've already done as much as I can, then it's time to rest. Doesn't always work, but I try!

    My mom worked in a Mental Institution for years, as a cleaner. She used to tell me of some of the injustices that went on. There were quite a few elderly patients that had been admitted in the 30's and 40's as children for having things like epilepsy. They had become institutionalised, and often picked up behaviours from the other patients, which left them inside. There were lots of patients that shouldn't have been there.

    i'm feeling a bit abandoned by my parents. We had a long chat on the phone last weekend that I thought went well. They asked why I was autistic and I said it was almost certainly genetic. It is very clear to  me now they are both autistic. 

    I did warn you of it, this is going to be a rough time. You will read into things, and see autism everywhere. Autism has many more factors than genetics. The truth is there still isn't an absolutely solid cause. My dad has strong traits, very strong. I can't put the ball in his court though. All he did was have sex, and get my mom pregnant. He had no control over it, neither did my mom.

    The best way to look at it is that we have it. Plain and simple. Even if it is totally genetic, they had no play in it. I understand the feeling of needing an explaination, but it just is how it is. You may feel distance, you may feel lots of things. That's that thing of the fallout. You need time for it to sink in. Forget why you have it, how it came about, and who may be responsible. We may never have the answers, I'm not waiting for answers I may never get.

    You will see autism in everything at first. Don't dwell on it. The best thing is to prioritise practical things that will help you move forward. Best not to get caught up in the things you can't ever answer, or do anything about. Accept what you can't do anything about, address the things you can work with.

    Fry's dog in Futurama - now that is just too sad! Reminds me of Greyfriar's Bobby who my last dog looked like:

    You sure know how to pick 'em, and take good pictures. Both of your dogs are cute as ***! Fry's dog in Futurama, Greyfriar's Bobby, both Hatchiko films. All of them are things I can't watch. Longing, sadness, love, loyalty, and dogs. A powerful concoction! 

  • 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.

  • Fry's dog in Futurama - now that is just too sad! Reminds me of Greyfriar's Bobby who my last dog looked like:

  • My dog is asleep on my lap after a long pacing and whining session. She may have picked up on the fact I'm not feeling great tonight. She's probably just tired. I got really frustrated with my Union earlier. Just needed advice about an Occ Health meeting on Monday and got passed from person to person. Eventually got a phone call at 7pm when I had given up hope. Now exhausted with far too many thoughts crowding my brain. 

    When I was a teenager a girl in my year at school developed schizophrenia - we were about 15. I used to cycle up to the psychiatric hospital to see her after school. I was appalled that she was on an adult ward heavily sedated with a flimsy curtain round her bed. Her mother had pinned a picture of Twiggy on her bedside locker because she thought she was getting too fat. 

    I volunteered in the long stay wards at the same hospital playing cards and dominoes with the old men. It was a terrible place. Years later I made a documentary with a woman who had been a patient there from the age of 14 after falling off her bike and getting a head injury.

    i'm feeling a bit abandoned by my parents. We had a long chat on the phone last weekend that I thought went well. They asked why I was autistic and I said it was almost certainly genetic. It is very clear to  me now they are both autistic. 

    Perhaps at some level they know it too, but don't want to know it. To be fair they did send a nice email after we spoke. But then the phone rang yesterday  - I could see it was their number but it stopped after two rings - they probably rang by mistake. They never phone me. Not sure why this upsets me so much.

    If we hadn't adopted Izzy I was going to consider fostering dogs when the owners go into hospital or refuges. There are several schemes like that now. I can't really cope without a dog after years of being with one. Somehow it makes me complete. Fell head over heels for Izzy and now  I am dreading going back to work. 

    Off to look up Fry's dog in Futurama.... don't know that film but probably should! 

  • No problem at all Sunflower.

    Sensory intensity, along with anxiety, are probably the most obvious features of my autism.

    Me too. I have hyposensitive symptoms too. I don't feel a lot of pain, but something like a stiff label in a T-shirt will feel like hell. My senses are fucked, the thought of something starting the sensory rollercoaster basically makes me *** myself. The anxiety and the sensory stuff play off one another. A vicious circle. I too have been trying, and sometimes finding strategies to cope.

    Feeling I was going mad sums up the last few months.

    It sums up about the last 30 years of my life! My grandfather, and my dog died around the same time. I was very close to my grandfather. Both of them were sort of a refuge for me. Very calming influences. I could talk to my grandfather about anything. He'd done so much in his life, and was never judgemental. As for my dog, I never shouted at him, he never shouted at me. I'd just come home, and we would be happy to just see each other.

    I knew a woman who spent years locked into a catatonic state,

    I was talking about my cousin the other day who suffers from Schizophrenia. She often goes into a catatonic state, that's when you know an explosion coming. She was telling me when she was having a pretty lucid period, that when it happens she "sees hell" and can't move. She gains her movement and snaps back into a more normal place in the blink of an eye, but she said it's like a drowning person getting up to the surface. All of the panic comes out at once. I've got quite a few Schizophrenic relatives, and with my ASD, plus Synaesthesia to boot, I always thought I'd be diagnosed with Schizophrenia one day. I kind of digressed there, but I just thought of how my cousin is, and the fear of madness. I think that not knowing what was up probably worried you too. I'm glad to hear about the bond that you and your dog are sharing.

    I was thinking of getting a dog, but it doesn't seem fair to the dog. I'm not too good mentally at the moment, and it just wouldn't be fair on the dog. I couldn't walk it regularly and I couldn't do that.

    Your dog is really cute! He reminds me of Fry's dog in Futurama! I just get a lump in my throat thinking about that! I better shut up. I don't want people thinking I'm a softie!Stuck out tongue winking eye

  • Hi there the total cost for my assessment will be £1250. This includes initial assessment, analysis of questionnaires, full developmental history meeting, ADOS-2 assessment, multi-disciplinary formulation meeting, feedback meeting, initial recommendations (follow-up email), letter confirming diagnosis, and full report.

    I have been invited to join an education and support group in the New Year which will involve an additional charge. 

    The assessment I had complied with NHS guidelines and is 'gold standard' - the kind of comprehensive assessment often not possible on the NHS due to funding constraints.

    You can get a diagnosis more cheaply, but you may not get as much insight into the nature of your difficulties or potential solutions. 

    I like the fact that the clinicians assessing me have set up a not-for-profit company because they are so keen to provide a service. 

    Hope this helps. 

  • Thank you so much for sharing, I am hoping to embark on the same journey soon. Would you mind telling me the cost involved?

  • 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.

  • Thank you Cloudy Mountains. I had expected strange psychological things to happen post diagnosis, but when I got up yesterday I was incredibly dizzy and my head was spinning. I decided to take Propanalol my GP prescribed a few weeks ago and soon felt OK again. 

    Sensory intensity, along with anxiety, are probably the most obvious features of my autism. Over the years I sometimes used a sensory diet at times of crisis, without realising I was doing it. I am considering doing this in a more deliberate way now. 

    Feeling I was going mad sums up the last few months. On previous occasions I always managed to ride out the crisis, but this time it was different, probably because my elderly dog had died I consider myself so lucky that this episode ended with autism diagnosis and finally feeling understood. 

    I knew a woman who spent years locked into a catatonic state, mute and cut off from her family after an episode of bullying at work. Her little grand daughter finally reached her and sparked her recovery by saying: "love is the key". My rescue dog and I are both in the overcoming trauma, learning to trust the world and play again. We have an incredibly strong bond - love is the only word that describes it. 

    Yesterday I worked out a way of getting my dog to pick up a toy. I put treats in a Tupperware container, then I put a toy on top. She had to pick up the toy to get the treats! It is lovely to watch her wagging her tail and running around full of energy - soon I hope to be doing this too!  She sleeps next to my bed at night and sensing her close to me makes me feel safe.