Diagnosis - please talk to me.

[thegreenlight]

Have made the decision to pay £2000 to get DS privately assessed for asd/adhd. Please tell me I’m doing the right thing. Its a lot of money. He’s 8 and I’ve known that there’s something not quite right since basically birth. Can I have positive (or not so) positive experience, please. This is a big step for us.

Good morning/ evening! My son is currently in the process of being diagnosed, the waiting list is long. What is promoting you to pay for a diagnosis? What would you gain from the private diagnosis? Be wary that a lot of companies prey on worried parents and charge extortionate amounts of money for these things. How will they assess him?

It depends why you want the diagnosis. If you plan to seek educational support, it could be an issue as some local authorities will not recognise all private diagnoses.

Speak to your local autism charity or parent partnership officer at the council before committing to anything.

You are doing the right thing. I knew the same with DS. I felt like I was shouting in the wind. No one would help me. Got a private assessment and we finally have a support package in place. He's doing so much better and we are all so much happier. Good luck OP

This particular Doctor has been recognised by LEA in the past and they have it as a main point in their website. Local waiting list is over 4yrs hence the private diagnosis (it was suggested by the school). I need to get this done, his self esteem is through the floor because of his poor impulse control. He’s been turned off learning because he can’t concentrate despite being exceptional as a young child. I just hope this is with it and makes a difference.

Well if you’re confident it will be accepted by the LA, go for it. I’m diagnosed (in adulthood). Two of my children too. I’ve never yet met an autist who regrets being diagnosed.

Also, if you end up going for an EHCP, that is a long slog in itself. So if you can afford it, don’t waste time on a ludicrous CAMHS waiting list.

Just my opinion but... from a school perspective it is not a diagnosis that should prompt support. Your son struggling should bring support. Would £2K not be better spent on occupational therapy, or similar that might help him? I don't think a diagnosis is going to bring the magic fix that you need. However, support from school senco, and proper planning and adjustments on their behalf now will. School do not need a diagnosis to provide support.

I want him medicated - I suspect adhd rather than autism. I do t want him getting to high school and having no support. Currently school ‘supports’ him by letting him leave lessons which has caused his academic achievement to nose dive.

All the best OP. Do fest you think is right for your DS. You’re his best advocate.

TBH, If the school have suggested assessment, I suspect they either really think it’s warranted and/or their budget won’t stretch to what’s needed. There can be so many funding issues and also internal politics.

At 8, everyone is starting to consider the secondary transfer implications of additional needs too. There isn’t bags of spare time if any diagnosis is to be considered for secondary school choice.

It’s ridiculous that parents should have to fork out, but unfortunately quite common. I did it for an OH report to shore up an EHCP request.

X post.

You’re making perfect sense to me OP.

I hope your son gets the help he needs. Don't let the school get off Scot free at the moment, or they suspect he has an additional need they can apply to the council for funding to support him. No diagnosis needed for this.

@thegreenlight

This particular Doctor has been recognised by LEA in the past and they have it as a main point in their website. Local waiting list is over 4yrs hence the private diagnosis (it was suggested by the school). I need to get this done, his self esteem is through the floor because of his poor impulse control. He’s been turned off learning because he can’t concentrate despite being exceptional as a young child. I just hope this is with it and makes a difference.

You are absolutely doing the right thing. ADHD is treatable but it needs to be diagnosed first by a competent psycologist.

If the waiting time is four years and you have the money, don't even second guess yourself, his mental health, self esteem, ability to concentrate and learn is on the line.

Unfortunately many people don't have the money but if you do, go for it. A good friend's son was diagnosed privately 10 years ago after years of suffering from the same issues as your son. After being diagnosed and put on medication he was given a price at the end of the school year as "the most improved in his class". Today he's a young man working full time, living independently and on minimal medication.

Good luck

I didn't pay for diagnosis privately but I do tend to pay for individual assessments from time to time when the need arises. My 7 year old was dx ASC aged 5 and ADHD a few weeks after turning 6. Both on the NHS.

Both my DC see an independent OT for reviews. My oldest is seen by an amazing specialist SALT for assessments every couple of years and receives SALT therapy from a second indy therapist weekly.

Everything is just so expensive.

As long as everything follows NICE guidelines then it can't be refused.

You don't need dx for support in school, it is needs based. The only difference dx actually made was that when we needed specialist schooling we weren't prevented from accessing schools that had had an ASD diagnosis requirement.

I think you're doing the right thing.
My ds was recently diagnosed with autism. It hasn't changed anything in terms of support in education (he already has an EHCP) but there are some local charities and support that we can access now he has a diagnosis.
With my ds it was very obvious he is autistic (he's only 4) but we felt having a diagnosis would help him and others understand him - which to us felt really important!
Good luck

Absolutely the right thing to do. You have everything to gain by doing this. Either you get a diagnosis 4 years earlier than you otherwise would, and can then get the support he requires. Or it is identified that he doesn’t have the conditions you suspect and you can start to explore other routes/strategies to support him. Either way, you’ll be able to start tackling things sooner rather than later, which has got to be a positive for both his education and his life in general.

My mum knew something was different about me when I was really young, but our GP always brushed her off. I finally for diagnosed with both ASD and ADHD at 16 and it has made a world of difference- I understand myself so much better, I know what helps me and what doesn't, and most importantly I don't feel like I don't fit in for no reason, which has improved my self-esteem and mental health so much. I got help in school and at university from that point onwards and I've managed to find a friendship group of all similar people, too, which has been life-changing. I hope it goes well, I think it's absolutely the right decision and your son can get the help, support and understanding he deserves

Well we are dong the same @thegreenlight, our ds2 is 13. Wish I'd done it at 8. @septumring99 kind of sums up why we are doing it - he needs to know.

I completely understand why you want to undertake a private assessment. I am amazed the assessment process is that long where you are...regional variations seem massive! Can I just recommend the ADHD Foundation as a contact for you. There is a wealth of information for parents and carers on their website as well as for children and young people too. They would also be happy to offer you advise about the assessment process if you make contact.

I did it for my DD12 a year ago because waiting lists were too long.

She has ADHD and the relief for her and me understanding what's going on was incredibly positive. I just want to emphasise that because it's not just about what we as parents need to know, it helps our kids knowing what's going on with themselves. You can then talk about being ND and point out successful people who are also ND.

She is on medication ( only on school days) and it's helping her hugely.

I have just booked my youngest for a private ADHD assessment. He has ASD already diagnosed, but the pathway for the ADHD is separate. He is Year 4 and slipping behind at school (school have applied for EHCP), so I don’t think we can wait for another year. If he needs medication then the sooner the better.

@thegreenlight PLEASE make sure that you are choosing the right professional for this. £2K is a huge amount of money for this. I have seen here links to these people who assess and in my professional experience they are not all they seem to be.

Also, you need to ensure that his school will accept and act on any report.

A psychologist can't prescribe medication- that's done by a doctor.

This is my background- teaching children with dyslexia and ADHD.
Many of my students has assessments by a paediatrician for ADHD (and an educational psychologist or specialists teacher for dyslexia.)

There is also a trend now not to give Ritalin and try to use behavioural strategies for positive changes.

Ultimately even with a label, your child's school needs to get a plan in place via the Senco. They ought to be doing this anyway.
Medicating is only part of the solution.

If you want to link to the place you are taking him for assessment I am happy to look at it. A lot of these places are very good at having a lovely website, but when you dig into the actual professionals and what they offer, it's not (sometimes) what parents need.

@SnoopyLovesLucy I was going to say it sounds like a lot. My DD assessment was 450 in total, follow ups and first couple of private prescriptions probably totalled about 1100 end to end.

OP do your research on who you want to work with. If you are around the Oxfordshire area I have a recommendation.

DD took 4 years through the nhs, it significantly affected her education due to delay in medication

DS took 6 weeks privately as we couldn’t even access the nhs, medicated much sooner so less disruption

Best money we ever spent

There are separate assessments for ASD and ADHD so that would explain the cost.

@elelel my DD was assessed for both at the same time. It wasn't 2k.