Private ASD assessment for 5yo DS

[VforVienetta]

DS is 5.5 and we recently took him to a private child psychologist as we are really struggling with him.

ASD has been discussed many times in the past by friends and relatives, but our GP suggested in the past he may grow out of the behaviour and that he was just at the far end of 'normal' rather than having any SN.
School raised the possibility of assessment in Reception but haven't taken it any further as he transitioned reasonably well into Y1.

[VforVienetta]

Bugger! 2yo hit Post for me!
Basically - the child psych has recommended a full ASD assessment, which will include a school observation and an OT assessment.
We think it's probably a good idea to continue using the private service rather than request this via the GP as it will surely be done sooner, but I'm seeing my GP this week - should I raise it with her, or just inform her that's what we're doing?

[blaeberry]

I agree that it is better to get a diagnosis through the NHS. Ask your GP to refer you on - we went via paediatrics but most people seem to get their diagnosis from camhs. Not sure if I would be reassured by the GP saying my ds was 'the far end of normal'. Given that GPs are not specialists being at the 'far end of normal' would prompt me to want a specialist assessment, There will be a wait unfortunately.

The problem with private assessments is that there seems to be a suspicion by LAs and schools that private assessors are just telling the parents what they want to hear and recommend totally unrealistic levels of support. It doesn't seem to matter that the professionals are just that with professional bodies overseeing them or that they might also work for the NHS some of the time. I've even seen it written on MN especially in relation to dyslexia.

[Fairylea]

Hmmm. My experience is different than the previous replies.

We had two years of NHS asd asssesment for ds (now aged 4.5) and despite all the professionals writing "probable" asd on everything no one was willing to give a diagnosis! For us this was incredibly frustrating as it meant we were not able to access a particular autism group local to us who required a diagnosis and we weren't able to apply to the asd specific school that we wanted ds to go to. Mainstream and complex needs schools were unsuitable.

So went to Daphne Keen in London who looked at our 2 years of assessments and also contact ds nursery for information etc. She then did her own 2 hour assessment and at the end diagnosed ds with asd, sensory processing disorder and dyspraxia.

I then took this back to the local authority and they discussed it and agreed they would accept the diagnosis as it was NICE compliant and also Dr Keen works within the NHS at St. George's in London. The diagnosis has also been accepted for ds ehcp and for dla purposes (you don't need a diagnosis for the care part but we wanted to apply for high rate mobility and autism is a diagnosis they recognise as severe mental impairment for those particular rules).

So for us, the £900 we spent was more than worth it. Just be careful who you choose privately and make sure the local authority will accept the diagnosis.

If we hadn't gone privately we would still be being assessed and some of the things we had wanted to apply for / do we couldn't have done.

[2boysnamedR]

I used Daphne Keen too. Her report was accepted and it's a appendix in ds statement.
DK didn't diagnose ASD but explained how he was over the cut off ( so within scores to have ASD) but didn't fully meet criteria. ( he's has two other diagnosis )
He acted very high in two of the triads but one was too low. I had been trying for five years to get him tested on the NHS and it was refused. So good option if NHS won't do it.
Just to give another point of view

[jellyrolly]

I would leave your GP out of it. Even an open minded one is unlikely to have the relevant experience to advise you in a useful way. It is far more common for a private diagnosis not to be accepted by an LA so I would err on the side of caution and go with the NHS. You will need more support as he gets older which will be harder to access and you could find a private diagnosis is used against you in the future. If he is settled well in school perhaps the length of the process would go in your favour as many healthcare professionals advise waiting for a high functioning autistic child to 'grow out' of their behaviours when they are young. I would suggest that until about seven or over a lot of outside agencies won't see what you see, although that's a generalisation it is common.

[VforVienetta]

All really interesting responses - thank you very much, tho I am still confused about which way to go!

We just need to know, iyswim, as we need help and coping strategies, otherwise we revert to Parenting 101 which A. largely doesn't work, and B. makes for a grumpy household.

[VforVienetta]

Thanks Polter
We find that because DS is borderline/high functioning or at least appears to be, people never know if they need to make allowances, and sometimes that includes us.
For example, do we insist on certain behaviours/manners regardless of his issues because they are the right thing to do, is he being bratty or can he in fact not help his reactions? Are we making his life harder with our behaviour expectations or are we actually being too lax?
So yes, we need help parenting him, and a DX may help us identify how we can do better.
DH in particular finds it hard not to take DSs behaviour personally, and after experiencing many years of a relative who's behaviour was caused by their condition, I know he'd find it easier to accept if there was an official 'reason' for it.

[Heytheredelilah1987]

We are going for an NHS diagnosis for my son, 23 months.

I would find a way to pay for private help if I felt it was best ; but I don't. I think long term getting the diagnosis from the NHS is going to help us all in the long run. I've heard many private diagnosis aren't taken as serious.

[Heytheredelilah1987]

*seriously

[2boysnamedR]

I would second looking at the nice guidelines on diagnosis. You'd be amazed at what some doctors still think regarding ASD.
I was told my son couldn't have ASD because he smiles and makes eye contact. Nice guidelines do not agree with that.
My boy who was diagnosed with ASD at three ( nhs ) is very smiley kissy and cuddly too.

[Heytheredelilah1987]

So how do we ensure NICE guidelines are followed when they go through the diagnosis ?

[VforVienetta]

Just read some and DS ticks most of the boxes for his age group. I need to make some notes to take - I'm terrible at standing my ground with HCPs.

[VforVienetta]

zzzzz I love 'off piste child' - DS to a tee! Except knowing him he'd probably be trying to ski uphill while correcting everyone's form...

[Santaseasonalfireplace]

Our NHS paed referred us for diagnosis but also said that the waiting list was so long that we should consider private assessment so we did, and then our NHS paed write saying that she fully accepted the diagnosis.

[VforVienetta]

Ooh that might be the way forward santa - I'll ask her if that's an option.

[2boysnamedR]

Following on from that - I don't know if there's anyway that you can find out the NHS waiting times to be seen in your area? While I live it's 6 weeks - 6 months so not to bad really.
The problem in my county is getting past the filtering stage. If the GP wants the referral and it's approved its still got to pass a 'panel' to get you in the pead office. So if you can find out how long the wait is then once the date has passed you can chase what's happened. I did this and found that the panel had dismissed my 13 year old as he was under five so it was rechecked and then it was approved. Another thing to think about. Maybe not all areas have these panels ( just three Drs looking at refferals round a desk from what the pead has told me which possibly is a good thing - I'm not sure).

[VforVienetta]

Interesting - I saw the GP today and she said waiting time is a couple of months.
She said she can't refer without a letter requesting it from his school, so I've asked the SENCO if she can help with this.

[2boysnamedR]

For my oldest boy I needed information from the school.
To be honest it was a bit bonkers as GP insisted that the school needed to refer, then the GP said the school had to.
I waited 14 months and was still concerned so I went to the GP with my list of concerns and a different GP agreed that time. After six months I heard nothing so chased it up. They still wanted input from the school but I think as I had asked twice and chased it around we got in front of a pead. He gave me forms for the school and referred on the next step without the input!
It all got a bit messy for my eldest but I'd just say just keep asking until you get the referral and once you get it chase it if the time limit passes.