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Private Diagnosis - 7 Year Old Girl

NAS67101

Hi Everyone,

I have a 7yo with behavioural problems that school initially indicated might be linked to ASD. She was put on the pathway for a diagnosis aged 5 and now at almost 8, after going to panel twice, we still have no diagnosis. After speaking to friends they have advised that the system they use on the NHS is not geared up very well to assess females and maybe going private might be a better option. I understand that getting a diagnosis won't change her, I just think it would help us and school to understand her a little better. I am terrified of her going to middle school next year without any sort of diagnosis. 

An OT spent some time with her and said she has Sensory Modulation Dysfunction. The most recent knock back from the pathway said that she didn't meet all of the criteria necessary for a diagnosis but outlined the following:

Experiences difficulties with emotional regulation and behaviour management

Does not alter her style of interaction with adults compared to peers

Does not tend to share in other people's interests

Can interrupt or talk over others and sometimes controls interactions

Often tangential and steers conversation towards her interests

Subtle difficulties with synchrony and reciprocity

Can misread social situations

Showed difficulty sharing enjoyment with others during assessment at times

Shows difficulty recognising the emotions, thoughts and feelings of others

Can misinterpret others' intentions

Talks quickly and relatively loudly

Can be overly physical in her interactions with peers and shows limited awareness of appropriate personal space

Can be impulsive – this sometimes affects peer relationships

Gets involved inappropriately in other people's conversations

Shows some difficulties with peer relationships and friendships

Can be easily upset by peers and is not tolerant of others

Finds it difficult to make choices at times

Easily frustrated if unable to do something or makes a mistake

Has an unusually strong sense of fairness and justice

Difficulties processing and following instructions in class

Very fidgety and finds it hard to remain seated, showing sensory-seeking behaviours

Can be sensitive to the feel of clothes against her skin

Do you think it would be worth us going down the private route and if so, where the hell do we start?

  • Dear NAS67101,

    If you are considering a private diagnosis for your daughter, it is very important that you see someone with experience of autism spectrum disorders. Details of diagnostic services in your area can be found on our Autism Services Directory: https://www.autism.org.uk/directory.aspx.

    You might also like to look at the information on our website about the NAS' own diagnostic services.

    If you would like to speak to someone you might like to consider contacting our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

    https://www.autism.org.uk/services/helplines/main/questions.aspx

    I hope that helps.

    Regards,

    Kerri-Mod



     



  • This sounds just like the issues we had with my daughter several years ago and I was in a similar situation with the local CAMHS team not being very helpful. CAMHS did not want to diagnose her with ASD and did not follow correct procedures in regards to looking at all the evidence from the various settings as well as our concerns (we made a formal complaint but it was just a slap on the wrist, won't happen again brush off).

    We had an OT seeing her about her sensory issues, SALT confirmed that her speech and understanding of language was consistent with a child on the spectrum, CAMHS didn't refer her to SALT it was her OT who fought for the referral via our GP, she went above and beyond to try and help us. We had nurses (unrelated health condition) telling us that in all of their years working with children they had never seen such extreme behavior. In the end a cardiologist (yes you read that right a heart specialist!!) who had "taken an interest in autism" did a 1 hour assessment in which she led my daughter into answers (and at times directly gave her the answer) to ensure certain boxes were or were not ticked (long story). At the end she said she wasn't on the spectrum but believed she had PDA, that's when I knew for sure that this woman didn't have a clue what she was talking about as PDA is considered part of the spectrum.

    We found a local charity who offers private diagnosis, they did a brief pre-assessment (observed her and interviewed us) before putting her forward for a formal ADI-R assessment with their clinician. The doctor observed and spoke with her, took into account the information from the OT, SALT, school reports, interviews with myself and my husband. He also took into consideration the genetic factor that I had been diagnosed a year earlier (at an NHS autism specialist clinic in Cambridge) with Asperger's and we came away with her diagnosis of ASD (specifically Asperger's) and they believed she may also have ADHD. My in-laws paid for her private assessment which I believe was about £600 (pre-assessment was £50), that was several years ago so I'm guessing the cost has gone up and would be closer to £1000+ as plastic mentioned. Try searching the NAS website for private diagnosis in your area, that's how I found the place my daughter was diagnosed, good luck and keep fighting for your daughter, you know her better than anyone!

  • I did the private diagnosis route - my company health insurance paid for it - your daughter's diagnosis may be covered if you have insurance with your employment.

    The process is easy - google who the best person is in your area, speak to the insurance to see if they are on their approved list, see your gp to get a referral and then make the appointment.       It can all be done in a couple of weeks.       If you're paying, just miss out the insurance part.      Cost can be between £1k to £2k if you're paying.

    My diagnosis took the form of a long chat where I guess the consultant was going through all the standard questions in the form of a conversation.      No-one else involved - I have no parents and siblings are unavailable for questions about childhood etc.       Result report was a couple of weeks later.    This was 10 years ago when I was 42 - I'm very, very Asperger's.