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Private diagnosis - are they all widely recognised

ddb

Sorry if similar has been posted before but I am new to this forum and finding a little hard to navigate.

I am the parent of a child (now considered an adult, as they have reached the age of 18) who we all believe is on the autistic spectrum and has had related issues throughout their childhood, but never got diagnosed despite a referral to CAMHS as a child (due to the long delays). We have now approached the GP about the possibility of a referral for an NHS diagnosis but it seems even if we are lucky to get this waiting lists will be excessive and we would like a diagnosis before our child starts university next year (hopefully).  We are therefore looking to go down the private diagnosis route.

Googling brings up quite a few results but they do not strike me as all the same in terms of the methodologies used.  Is one private diagnosis as good as any other or are say some providers or types more accepted than others should we wish in the future to use the diagnosis to request further support for our child be it in university or elsewhere?  Is there say some question we need to ask a provided to ensure their diagnosis could be widely recognised?

Obviously we will have a number of things to consider in selecting any private supplier for the diagnosis, not just the cos,t but the format may need to be something our child is comfortable with and we would want avoid any excessively long diagnosis so say we could get a diagnosis before the start of the university year, but my main worry is we could spend money on such a diagnosis but find the provider's diagnosis is not widely recognised.

Does anyone have any experience in such matters?

Thanks

  • in reply to aidie

    Could be - I wasn't paying attention at the time - my wife arranged everything - it all happened so fast - from my friend's wife (a teacher) mentioning over a Chinese meal that I had all the traits - to talking to the gp about it and getting the ok from the insurance company and within a week I was sat in a very nice private clinic in a lovely country house setting.

    I just remember 'clearly has Asperger's' being written many times in the report.   Smiley

  • in reply to Plastic

    who ,,,,,,   the "Simon Baron-cohen" ? 

  • Short answers -

    Your company health insurance may cover the costs - worth looking into.

    Some companies basically charge you to fill the free on-line tests in and provide nothing at the end - always talk to the company and find out what they supply and proof that it is accepted by DWP and NHS

    Your local ASD or mental health team should be able to point you in the right direction for a private assessment.

    Costs typically seem to be between £1200 and £2k

    Support after a diagnosis is patch or non-existent - universities can be very helpful (speak to their student assistance team) and the DSA can provide money for mentors or special equipment etc - but you've left this all a bit late if they are looking at uni for Sept 21.

    I was diagnosed in my early 40s - the whole thing took a couple of hours as in informal chat (I guess he was doing all the questions in a conversation framework) and that was it - back in the day, my consultant was *the* top man in the country - he wrote most of the books.

    I am very, very Asperger's so I'm probably very easy to spot and diagnose.

  • I have been through the system multiple from the age of sixteen to be assessed for Autism, ADHD and dyslexia among other unusual learning disabilities and so far it took from the age of twenty two to be diagnosed with having autism and still awaiting for my assessment for ADHD at the age twenty four.

    Private Diagnosis may be quicker to obtain but some local authorities and educational establishments do not always accept them as evidence of autism spectrum disorder and may require you to go through the NHS route despite your child obtaining a private diagnosis, it’s a massive post code lottery so check with your local authority. Some private autism assessment may be overseen and over shadowed by NHS professional that can validate the diagnosis which would prevent your son having to unfairly going through the public NHS diagnostic progress. 

    private assessment can be costly. Depending on the professional or organisation assessing your son may be beneficial. Typically private assessment have professional who can diagnose a wide range of neurological developmental disorder and learning disabilities during the same assessments . Private assessment professionals are more likely to notice one or more conditions including ADHD, Sensory processing disorders and complex learning difficulties. But this can mean that the professional or organisation will charge extortionate amounts of money to for each diagnosis. 

    The NHS system and the CAMHS systems are extremely flawed. It very common for people to be lost in the administration system and referrals to cancelled without informing patients or General practitioners. This means people typically go through the system multiple time waiting longer than the waiting list statistics state. It’s important for parents and adults to contact the organisation such as CAMHS weekly to make sure the referral was received, accepted and being processed. It’s also important from experience to call CAMHS at least every two weeks and record conversation and document when you have called to ensure they do not false close your sons referral. 

    the NHS route for those over the age of sixteen is extremely difficult as CAMHS and Adult Mental Health services have cut corners and hire professionals who are only qualified to assess one neurological disorder and will be able to diagnosis for example autism but unqualified to assess for ADHD which if its the case similar to mine will require you two go through the same system again and wait another possible few years to be assessed. 

    I went through the private route when I was eighteen and to be honest with you it was a waste of money as my local authority do not accept private diagnosis as evidence for autism. 

    I suggest you contact local authority at request a needs assessment for your son. All local authority across the UK has an obligation to carry out a needs assessment if requested and can legal not deny you you request for an assessment. 
    If the needs assessment is successful and they have successfully assessed your sons needs may result in the extra support you are looking for. If a social worker is involved they can support your claims for extra support and help override decisions in your favour while waiting for the autism diagnosis. 

  • I don't think autism is like dyslexia in terms of evidence for disabled student adjustments. With dyslexia I needed a very specific type of assessment by a certain type of health professionals but for autism my GP just filled in a form.