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

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
  • Hi, I am not sure if this is helpful, but I had a pre-diagnostic assessment with Sara Heath. I am currently waiting to be assessed (in Germany though) but I was struggling a lot at the time and I felt like I needed some clarity sooner. I was recommended to contact Sara and I am very happy that I did-  It felt good to be able to talk about my challenges and to get some clarity. She has also written me a letter detailing her opinion and listing any traits she picked up on. This should help me get a diagnosis. For me this was ideal, especially as I am moving countries so much and I am unlikely to make it to the end of a waiting list any time soon. 

    Autonomy Plus - Pre-Diagnostic (shropshireautonomy.co.uk)

Reply
  • Hi, I am not sure if this is helpful, but I had a pre-diagnostic assessment with Sara Heath. I am currently waiting to be assessed (in Germany though) but I was struggling a lot at the time and I felt like I needed some clarity sooner. I was recommended to contact Sara and I am very happy that I did-  It felt good to be able to talk about my challenges and to get some clarity. She has also written me a letter detailing her opinion and listing any traits she picked up on. This should help me get a diagnosis. For me this was ideal, especially as I am moving countries so much and I am unlikely to make it to the end of a waiting list any time soon. 

    Autonomy Plus - Pre-Diagnostic (shropshireautonomy.co.uk)

Children
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