Is there any value in getting a private diagnosis for my 7 year old?

We believe our 7 year old is autistic. We have submitted all the forms for an assessment with the school. It sounds like the assessment will take at least 18 months. Is there any value in getting a private diagnosis? We’ve heard from other parents that the school and LEA won’t recognise a private diagnosis so there is little point in it. The school haven’t really answered me when I’ve asked. I don’t really want to wait 18+ months for my son to get extra support if he is autistic. Any advice please? We are new to all of this so don’t really understand how it all works. 

for context - our boy doesn’t have any developmental delays and finds his schoolwork easy. He also doesn’t have meltdowns at school. So I suspect he is low on the priority list for SENCO.

  • There was the fuss about "buying" ADHD diagnoses. I doubt many practitioners would risk their reputation and livelihood by deliberately selling fake diagnoses. It is possible, as in the case of certain journalists, to lie about one's medical history to mislead the specialist. The thing about ADHD is that it is treated with controlled drugs. I can't see any advantage in seeking a false diagnosis of autism.

    In the case I described, the local authority social worker's EHCP report was, if I recall correctly, about half a page of A4. My witness statement was five pages plus appendices and took several hours to prepare ... a local authority social worker would not have the time to write up each case in such detail. By going private you are in effect buying a professional's time. Compare an NHS GP appointment which lasts ten minutes with an appointment with a private GP for half an hour. Private practitioners have smaller caseloads and can devote more time to listening to each client / patient.

    As an expert witness, although I am instructed by one of the parties, my duty is to give a fair and balanced opinion to the Tribunal. I once had an inquiry from a parent who would only pay me if I agreed to support their request for what I considered an inappropriate residential ABT placement - I of course refused the job. That is why I prefer to take referrals from solicitors or other professionals.

  • Yeah that's a good point about it not being recognised...basically some institutions or bodies of authority will be sceptical mainly because in SOME circumstances and NOT all btw some professionals who diagnose will give you the diagnosis you want or it may be seen this way..not saying you would do that of course. 

  • Under the Equality Act 2010, it is not up to the school  (or employer or any other supplier of goods and services) to "accept the diagnosis" - a clinical diagnosis is evidence that the person has a disability, and there is a legal duty to make "reasonable accommodations" from the moment the school is informed. Not only that, once someone in authority has been informed (class teacher, SENDCo, Head Teacher) the duty applies to everyone in the school. The Public Sector Equality Duty is precisely that - a duty. Local authorities have "powers" and "duties". A power is discretionary - the council has the power, say, to build a paddling pond in the park, but it does not have to if it doesn't want to. If a council fails to carry out a duty it can be taken to court or tribunal and made to do it.

    Plus, getting a diagnosis is not just about school. A proper diagnosis will give an outline of areas of strengths and difficulties and suggestions for dealing with particular needs or issues. It will help the parent and young person understand their uniqueness.

    The scandal is that parents have to pay to go private. The NHS and local authority children's services are underfunded.

    What I don't understand is that every year people accept that their insurance premium for their house, car, holiday, or whatever insurance will go up.  Public services are funded by taxation - so why do politicians cut taxation?  It is like the AA saying " We have cut ten pounds off your annual fee" (hurray) but then telling you that when you break down you will have to wait six hours for a mechanic because they have cut the number of response vehicles to save money. Or cutting your car or house insurance and doubling your excess if you claim. We can argue over tax rates, or taxing non-doms or whatever, but the bottom line is that fixing our public services will need a lot of investment - and that means increasing the total amount of tax collected, not giving tax cuts to your mates.

    I do independent social work assessments for EHCP appeals. I charge the going rate, but I am not cheap. I sometimes have mixed feelings about my work. The plus side is that my reports have helped families to get the support their kids need. The downside is that going down the private route is not cheap. In one case the parent had one of the leading education law firms representing them and had expert reports from an independent psychologist, independent occupational therapist, and an independent social worker (me). I doubt they got much change from £20k taking the case to SENDIST. The local authority was not happy with the level of support the Tribunal ordered, which was far more than their own cursory " needs assessment", but they had a duty (see above) to follow the Tribunal's ruling. I don't blame the parents for doing what is best for their child ... but not all parents have the financial resources to pay for experts to support their case. My worry is, what about those who can't afford to go private, or can do so but only with considerable hardship?

    I don't blame my over-worked colleagues in Children's Social Care ... most authorities are overspent by millions on their SEND and children's social care budgets. They are required to consider financial realities and spread their resources thinly to make ends meet. The authority I worked for had to reorganize to save £1m from children's services. They made experienced (and expensive) staff with autism experience redundant or take early retirement, and employed fewer newly qualified (and cheaper) social workers as generic " Children in Need" workers. The new workers' limited understanding of neurodivergence shows in some of their EHCP reports. My concern is that the neediest families will get a service that is hopefully "good enough" from statutory services, but it is like living on pasta and baked beans from the food bank, adequate.  Those who can afford to go private are shopping in Waitrose and getting yummy organic choices.

    In an ideal world, we would have statutory services that made "going private" unnecessary. But I can't see it happening soon, irrespective of who wins the next election.

  • Check with ones local athority and get written confirmation that they accept private diagnoses as some local athorities will only accept NHS diagnosis. If they say they do, then you are covered and it will be money well spent. If they don't, then it is a waste of time and money.

  • I can't see how or why the school can "not accept" a private diagnosis. If it is carried out by a properly qualified assessor - a chartered psychologist or medical doctor with autism training" how can they not accept it?

    Many LEAs do require their own educational psychologist to be involved as "gatekeepers" in the EHCP process, and waiting time delays are a way of reducing the demand for EHCPs and thus saving money ... an eighteen month delay might mean saving a year and a half of a TA's salary.

    Leaving aside EHCP, the Equality Act states that the school has a duty to make "reasonable accommodations" for people with disabilities, and autism is legally a disability. If you get a private assessment it should describe what accommodation your child needs. The school has a budget for SEND. There is a get-out if that the school can argue that they cannot afford provision without harming the education of other pupils - this can end up as a legal issue. Waiting six months for a case to get to Tribunal is another way of saving money. 

    We have elections coming up. This may be the time to contact your local councillor and demand proper services from the NHS and the education service. NHS funding will probably be an issue in national elections too.

  • Have a look here: https://psychiatry-uk.com/psychiatry-for-children/autistic-spectrum-disorders-in-children-and-adolescents/

    There is a contact email on the page and contacting them may be helpful. It appears that they are quite cautious in recommending online private assessment for children, which is a good sign.