Diagnosing non verbal 10 year old, told not possible?

We have been with CAMHS for a number of years. Three years ago my daughter had her first ASD assessment. The assessment concluded as inconclusive as my daughter was non verbal. We made a complaint to the trust that the test was not suitable for a nonverbal child, and seeing the trust knew she was non-verbal the test was inappropriate. There is more to the story but the complaint was investigated by an external investigator who found the trust at fault. We received an apology from the trust acknowledging the mishandling of the process.

Moving on, last year we were placed with the neurodevelopment team. Today our 10-year-old daughter went for her first 3-hour assessment. The psychologist said a definite diagnosis would not be made as she is nonverbal and only part of the test could be completed. The best we would receive would be a 'Could be' diagnosis. we received an official apology for the years and the neurodevelopment team.

I'm obviously not very happy as it seems a repeat of her first assessment done when she was 7. What would you do as a parent in my situation? My daughter has another three-hour session next week and is reluctant to place her under more stress when a formal diagnosis still cannot be made. 

Shouldn't there be provisions put in place knowing that she is non-verbal (e.g using flashcards, Makaton, etc).  Isn't there a different test that should be used? I'm feeling furious atm as it seems a repeat of the failings previously. 

Your help and advice is very much appreciated. Please help.

Paul.


  • Excuse me profusely for perhaps being wrong ~ but in respect of the psychologist saying that a definite diagnosis would not be made, might their name be 'Willis' possibly (?) :



    Here follows a very reasonable article it seems on:


    Understanding Nonverbal Autism

    https://www.verywellhealth.com/what-is-nonverbal-autism-260032


    And if you are not already studied up and would like to be, here follows a PDF link for the 5th edition of the American Psychiatric Association's Diagnostic Statistical Manual, more generally referred to as the DSM~5 ~ as is for diagnostic purposes specifically or also used in the NHS:


    https://drive.google.com/file/d/10r_oUv_fZXQ4jUVXQC-4UnMdaneR3TD5/view


    With the relevant subject headings starting on page 69 of 970 (numbered as page 31 in the manual) with 'Neurodevelopmental Disorders', and from page 88 of 970 (numbered as page 50 in the manual) with 'Autism Spectrum Disorder' and it's 'Diagnostic Criteria'.

    And or maybe read up on and get in touch with the Lorna Wing Diagnostic Services to answer your question via the following link:


    https://www.autism.org.uk/what-we-do/diagnosticservices


  • Hi

    Is she completely non verbal?

    Either way, the assessment process should be changed to suit her. A history is going to show a lot of her issues, just as being watched at play, or seeing how she interacts is. If she is competent using those other methods they should play a part too. I can’t understand why she wouldn’t get a proper diagnosis?

    I know several children who have had a diagnosis before 10, who are non verbal or minimally verbal, so it is possible.

    Hopefully someone here has an experience they can share with you.