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My 21 year old daughter has had two assessments - Feeling worn down - Where do we go from here ?

Trixiepixie

Hi, 

I'm new to the site and hoping for some help & advice as to what to do next.

Although we've always known one of our daughters has been a little different, we felt the right decision was for her to decide if she chose to seek a formal diagnosis in adult life - fast forward to the pandemic and she felt a diagnosis could offer an explanation of the difficulties she encounters & the 'quirks' (being somewhere on the spectrum had previously been mentioned before by a counsellor who spent a lot of time with my daughter but didn't believe in labels) 

I set the wheels in motion with our very sympathetic GP and a year later a triage apt was expedited following on from a manic episode of OCD thought processing and subsequent crisis team assessment. The first triage apt felt very rushed and culminated in being told the assessment process would end there as along with social anxiety, being born anxious and OCD - she was just a bit 'Kooky' 

I was shocked & after another conversation with our GP a second opinion referral was made, we were advised the 'new team' (speech & language therapist, specialist nurse & assistant psychologist ) would have no knowledge of a previous assessment having taken place & would be different clinicians. It felt more thorough this time and i had a follow up call to detail early years to adult hood - They were aware of a previous assessment having taken place and made reference at points - I held out such hope this time but a couple of days ago the report arrived. The conclusion being that although she did not meet the criteria for a diagnosis of Autism Spectrum disorder they identified significant general and social anxiety & OCD since childhood - suggestions of various organisations detailing telephone numbers & groups meetings (my daughter would not in any circumstance make or answer phone call to someone she didn't know, won't even answer the front door if the bell rings and certainly wouldn't attend or speak in a group session) 

I would try for a private assessment but the cost seems astronomical - Is the NHS assessment so rigid in it's criteria for diagnosis that only those that hit all of the expectations go forward for full assessment - I'm worn down as it's been a lifetime of hurdles and the hope of answers still out of our reach but i will walk over broken glass & hot coals if needed to get my daughter the answers she needs, I just don't know where to go next Disappointed

Parents

  • Goodness, I'm confused reading this as to whether your daughter has actually had an assessment or not.  Are you saying that they have twice over had a short preliminary interview with her, but no one has done a full assessment?  If so, I wouldn't be happy with that at all!  It sounds like you were saying, you had some short interview with her and one phone call to you.

    ....errrr, I was in my assessment for FIVE HOURS.  And they had an interview with my mother, and a word with my best friend, and an extensive sensory questionnaire, and my school reports, and my teenage diaries, and any and all MH paperwork I could lay my hands on, and my dyslexia assessment....  You can't assess for autism properly on the basis on a quick chat and a phone call with mum, particularly not for a kid who may be a more subtle presentation.

    To be sure, sometimes the problems presented and first thought to be autism, can sometimes be due to other things, such as social phobias and if that's is genuinely the case, that is what should be accepted.  But if they haven't actually done a FULL autism assessment how can they be sure that ASD is not there and that she may not have a social anxiety etc BECAUSE of autism, not instead of autism.  

    Hmmm... The criteria for diagnosis isn't in anyway different for the NHS to any private consultant.  The criteria are the criteria as per the diagnostic manual!  End of! Question here is: have they actually looked for all the criteria?

    No, in your shoes whether she is or is not autistic, I would not feel content that this had been properly done and I would be complaining about that.  After all, if she isn't autistic, you'd want to feel confident that she isn't and not be worrying all the time that something has been missed, surely?  And wouldn't you want to feel that the diagnosis of whatever the problem actually is, is the right one?  Getting a third go on the NHS would be difficult and you might need to go privately if you at all can.  Yes it is expensive and you need to be picky who you choose, making sure they are experienced, their training is uptodate and have a reputation for being thorough and have expertise in co-morbidities.  The expertise in co-morbidities is important because these are the people who are qualified to tell when another problem is the explanation instead of autism and when autism may be present in tandem with another problem, or even as the cause of another problem.

    Before you go there though, you should get a full report detailing explicitly where they do or do not think she meets all of the criteria.  It shouldn't just say: 'she's not autistic but does have social phobia'. That report should help you understand what they weren't seeing evidence of in order to make out a diagnosis.  If they aren't explaining all of the criteria in terms of what was and was not there, I most certainly would jump up and down.  

  • in reply to Dawn

    Thank you Dawn Slight smile

    In our area you're given a triage apt (one hour) to decide whether you are allowed to go for full assessment - The reasons cited in the lastest report is she has a number of skills which is not in keeping with a diagnosis of autism because

    1. she demonstrated interactions between her & I and they didn't have any difficulty understanding her.

    2. Using emotional language to describe your own experiences - These skills would be out of keeping for a diagnosis of autism

    3. Despite avoidance of social situations she gave evidence of meaningful relationships, sharing time, interests & experiences (she meets with her one (autism diagnosed) friend regularly to do the same things in the same places)

    4. She integrated her gaze with her speech and used gestures and facial expressions.

    5. You prefer your belongings in a certain way but there is a degree of flexibility that would not be observed in autism.

    6. The description of interests were varied (more than one) and has not caused you difficulty in life

    I know there is something that needs investigating further but I know the route won't be the going back to the same assessment centre for a 3rd time - I just know it would be pointless - I'm going to speak with my GP again over the next couple of weeks (time dependant on when i can get a phone apt) and she what she suggests.

  • in reply to Trixiepixie
    Trixiepixie said:

    . she demonstrated interactions between her & I and they didn't have any difficulty understanding her.

    2. Using emotional language to describe your own experiences - These skills would be out of keeping for a diagnosis of autism

    3. Despite avoidance of social situations she gave evidence of meaningful relationships, sharing time, interests & experiences (she meets with her one (autism diagnosed) friend regularly to do the same things in the same places)

    4. She integrated her gaze with her speech and used gestures and facial expressions.

    5. You prefer your belongings in a certain way but there is a degree of flexibility that would not be observed in autism.

    6. The description of interests were varied (more than one) and has not caused you difficulty in life

    What rot...

    1. Most autistic children interact with their parents.  Some non-verbal kids don't, but most interact with their parents. That interaction may have some differences, but generally there is some. Some autistic kids, like me, had very advanced language skills - acquired in a markedly different way and used differently, but yes, I opened my mouth and my mother understood.

    2. Not all autistic people have alexithymia (an inability to describe or recognise emotion within their bodies). I do, but I still use emotional language.  I work out what I am feeling in other ways and express that.

    3. Whilst many autistic people have difficult making friends; many of us do have friends.  We even get married and have kids. And those relationships are meaningful. And yes, we often gravitate toward those wired like ourselves.  Actually, I find their statement a bit insulting.  they are suggesting autistic people can't have meaningful relationships - utter rubbish.

    4. Some autistic people can even be great actors.  Many appear to make eye contact, but are actually looking at your ear.

    5. Needing your belongings in a certain way may be an indicator, but the absence of that doesn't rule it out.

    6. And yes, I have a lot of interests.  I hyper focus and get obsessional one at a time, before putting one down to lose myself in another for months...

    Personally, I don't think these guys have very uptodate training.  Those aren't reasons not to assess.  Those are reasons why a very slow, careful indepth assessment is required.  At lot of this stuff is really ambiguous and could be either autism or something else and she needs to know. If she is in the end autistic, she'll be a subtle presentation who has learned a shed load of coping strategies.  And if she isn't they need to be able to properly explain all the problems she is having.

    I'm so sorry.  I feel for you.

Reply
  • in reply to Trixiepixie
    Trixiepixie said:

    . she demonstrated interactions between her & I and they didn't have any difficulty understanding her.

    2. Using emotional language to describe your own experiences - These skills would be out of keeping for a diagnosis of autism

    3. Despite avoidance of social situations she gave evidence of meaningful relationships, sharing time, interests & experiences (she meets with her one (autism diagnosed) friend regularly to do the same things in the same places)

    4. She integrated her gaze with her speech and used gestures and facial expressions.

    5. You prefer your belongings in a certain way but there is a degree of flexibility that would not be observed in autism.

    6. The description of interests were varied (more than one) and has not caused you difficulty in life

    What rot...

    1. Most autistic children interact with their parents.  Some non-verbal kids don't, but most interact with their parents. That interaction may have some differences, but generally there is some. Some autistic kids, like me, had very advanced language skills - acquired in a markedly different way and used differently, but yes, I opened my mouth and my mother understood.

    2. Not all autistic people have alexithymia (an inability to describe or recognise emotion within their bodies). I do, but I still use emotional language.  I work out what I am feeling in other ways and express that.

    3. Whilst many autistic people have difficult making friends; many of us do have friends.  We even get married and have kids. And those relationships are meaningful. And yes, we often gravitate toward those wired like ourselves.  Actually, I find their statement a bit insulting.  they are suggesting autistic people can't have meaningful relationships - utter rubbish.

    4. Some autistic people can even be great actors.  Many appear to make eye contact, but are actually looking at your ear.

    5. Needing your belongings in a certain way may be an indicator, but the absence of that doesn't rule it out.

    6. And yes, I have a lot of interests.  I hyper focus and get obsessional one at a time, before putting one down to lose myself in another for months...

    Personally, I don't think these guys have very uptodate training.  Those aren't reasons not to assess.  Those are reasons why a very slow, careful indepth assessment is required.  At lot of this stuff is really ambiguous and could be either autism or something else and she needs to know. If she is in the end autistic, she'll be a subtle presentation who has learned a shed load of coping strategies.  And if she isn't they need to be able to properly explain all the problems she is having.

    I'm so sorry.  I feel for you.

Children
  • in reply to Trixiepixie

    Fight, love. Fight. You are not a neurotic parent and your daughter is so lucky to have you on her side.

    One way or another she needs assessing properly. 

    Yes, we are BORN ANXIOUS!!!! Because the sensory and social world is constantly bombarding us. Lol, google the term. You'll come us with an autism positive T shirt company called 'born anxious'. We're born anxious because we're autistic.

    I am so very, very sorry you and your daughter are going through this. It is wrong, so very wrong that you can't get to the truth through the NHS system you pay for in tax. But go Hell for leather to get her truth, however you can. Seriously, I paid £3k to be properly assessed by the world's best, but had I waited on the NHS, I'd be dead now.

    Autistic or not, with some other MH problem or not, we have a right to our truth.

    God bless you. Come to us any time you need our encouragement x

  • in reply to Dawn

    Dawn - I lcould cry as you have literally said what I've been thinking , so THANK YOU - Hyper focus absolutely describes my daughter & she has definitely learnt how to behave in certain situations - has difficulty making friends but has her bestie & has had  other friends in a limited capacity, I felt like a neurotic parent who obviously hadn't spent the last 21 years as my daughters rock who has got her through all of the hundles she's encountered - The first assessment detailed she was born anxious - something i'd never heard of !!. I'm saddened that unless you are on the less obvious part of the spectrum you end up doing through life, potentially at a disadvantage due to not being diagnosed - You have put a bit of fire in my belly though !!