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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

  • Fight, fight, fight. You know your daughter best. We were ‘fobbed off’ as well. 5 years after my initial concerns, they gave her an assessment, and didn’t diagnose her with ASD. All reasons given were utter rubbish, I’ve outlined them somewhere here more than once. My daughter smiled, looked embarrassed, shrugged her shoulders, gave eye contact, was pretty, dressed nice, had an imagination, was personable, was able to mimic people, and so on….


    Regarding private assessments, they can be better, but you need to choose the right person or place. Some have assessments exactly like the standard NHS one, which doesn’t cater for masking, or for how females may present. It’s outdated nonsense. Yes, they are expensive, but that’s only because we’re used to having free healthcare. Some of these ‘free’ services are a waste of everyone’s time and money. 
    I really couldn’t afford my daughters, but her father and I paid half each. She had such a turbulent difficult life, especially during teenage years, and I needed her to be around for her lifetime. It was that serious. So, it was money well spent and I had to accept the dent in my minimal savings. 

    However, I decided to do the same for myself. Best money I ever spent. Yes, I’m lacking in savings now, but I feel whole, and know who I am and what I’m capable of.

  • in reply to Catlover

    Bravo! But this is wrong. I'm in tears now for our siblings who are denied their needs because they can't pay. We have to fight for them.

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