Private 'autism' diagnosis unconfirmed by NHS

[Kakty3]

DS is 3y8m and had a dx of 'autism' privately from a child psychiatrist in April. The psychiatrist spoke to us 'above average intelligence' and 'pragmatic speech disorder' after the assessment, but none of this made it into his report.

A littler earlier that month, we went to our NHS GP, who referred us for a multi-disciplinary assessment team. The assessment was not due until autumn, but we were able to bring it forward through a cancellation and had it last Thursday for just over 2 hours.

The team consisted of two paeds (one of which is a neurologist, I didn't get the second one's specialism) and a SALT. At the end, they said that they couldn't confirm the diagnosis and mentioned the word 'adequate' about a gazillion times during their conclusion, which felt like a cop out and save public funds. Their argumentation was that he has demonstrated "some very good skills" during assessment (yes, he can build elaborate block bridges, looks you in the eye and plays along if you are doing something that interests him!) and they weren't/aren't able to observe his interaction with other children (he is not in the nursery) and fully assess his language (as English is not what we speak at home). They said they will follow up on the language front and arranged for a 'genetic' blood test, and then will decided whether they will do ADOS (???). We will receive their report shortly. We will also get a referral to a nutritionist.

For context, DS talks a lot (but is echolalic, mixes up pronouns and word order and doesn't ask any questions and can't answer 'wh' questions, but his vocabulary is good and used appropriately), he has great eye contact and motor skills and is very sociable with family and our friends (adults), but pays little attention to other children. No imaginative play, but is very good with puzzles, shapes, letters and numbers (e.g. he can count to 100 and back from 20). Very limited diet (literally five food items and a single beaker for water) and numerous other manifestations of rigidity exhibited daily. Some sensory issues identified by OT (proprioception, auditory processing). Rotating obsessive interests (gates, traffic lights, trains, busses, locks). Used to line toys and other objects up. Difficulty keeping attention/responding to things that don't interest him. I can go on...

We are starting ABA programme in August, which we are funding privately for now. We are due to move in July, after which we were intending to apply for SEN, but I am afraid the above has thrown a spanner in the works.

What should we do now? I am aware there is a High Functioning Autism Centre at GOSH, which deals with more complex diagnostic cases, but how do I get a referral? Our GP said he won't consider it until we have had the MTA, when asked.

TIA!

I'm sorry to hear your are having these issues. I am afraid I cannot help much however I am sure someone who can will be along very soon. Mumsnet has helped me enormously.

Did your private dx consist of doing ADOS?

We too only have private dx at moment and are still going through the nhs system. I feel for you with this matter.

Good luck I hope you get some help soon

I hope someone comes along and helps you. The only thing I could say it's that it took a while for Ds to get a dx as we were a bilingual household and the first couple of SALTs that dealt with DS thought it was speech delay or disorder and the fact that he was trying to learn two languages at once didn't help sort of thing. He was first seen when he was 3.3. We trusted their opinion as we thought health professionals had our child's well being as their priority (!) but we were still worried and it wasn't until his preschool (now school) and his current SALT confirmed our concerns that we were referred to CDC paed who dx him with ASD very quickly (age 6).
I'm just saying that at first they tried to play it down until we got the right people and right support.
Good luck.

Try to find a parent-and-toddler group, you can video your ds there, and bring that to the next appointment. Ideally sign up for one in a children's centre, if possible one with enough multilingual staff and dc to banish any nonsense about bilingualism being the cause of the communication issues.

Some sort of nursery setting is needed, so everything that you've already eloquently described gets displayed in public. It is then noticed, and noted down by an unqualified 16y old childcare student, her 21y old trainer validates it, and you have the magic 'professional corroboration'.

The quicker option (if practical) is to get the ADOS done privately. Or you could ask the private psychiatrist to contact the NHS team for a more detailed discussion of his/her reasons and rationale for diagnosing autism.

Tbh I think you're already doing the best thing you can do at this state, which is starting ABA. Even if you did get an NHS dx you wouldn't get offered any actual intervention, except perhaps a future date for maybe some SALT.

But of course when it comes to school, you'll prob want s statement, so if I was you I'd write to the paed and demand ask for the ADOS to be done ASAP. That is the usual method of dx asd definitively, even a 'borderline' case.

Does he go to nursery? If so, can you get staff there to back you up with their reports of lack of imaginative play, interaction etc. if you have the ADOS they should ask nursery for report too.

Also it is really important you start documenting all progress made through ABA - to try and get funding for this through a statement it is essential to have solid evidence that it is ABA that has made the improvements (which you will almost certainly see pretty soon if you have a good team!). So eg you need to have irrefutable evidence that in July 2013 ds could not converse using "when" or "why" but after 2 months of intensive intervention on your aba progremme he had gained this skill, so it is clear that it is only ABA that got these results.

He sounds very similar to my ds at that age btw (oh I remember the traffic lights stage wel!). He is now 6yo, is doing brilliantly, almost certainly as a result of a year of intensive ABA and ongoing ABA-lite.

Sorry just seen he doesn't go to nursery. Agree with mumudelulu, video him at home, at play groups, and with family get togethers for evidence.

Dear all, thanks very much for your helpful comments and support, it means a lot.

We haven't done the ADOS yet, but our psychiatrist recommended doing it with one of his colleagues (a SALT experienced with ASD children) as a follow-up to his report (he used ADI-R and child observation himself) and it looks like that's what we should do. We delayed it, hoping that's what NHS will do it (and save at least some cash in the process, given there seems to be almost a never-ending source of cash costs now...), but it seems we are better off powering through this on our own and I need to save the mental energy for the statementing process, which I am sure will be an uphill battle...

We have some recent relevant videos of DS (some of the ABA consultants that we've been talking to have asked us to film him), but I also forgot to mention that we have a reputable Edu Psych booked to do his assessment in August prior to ABA start (that goes into 'documenting progress bit' and I just genuinely want to know what he thinks). However, I need to up my game in terms of actually writing things down (as that's something I do not enjoy doing), so thank you again for reminding me.

PS: It goes without saying that without the SN board we would be absolutely lost and helpless, as just three months ago I thought we have a quirky science professor in the making and were blissfully oblivious to the world of special needs. I have spent the last two months reading through many of the old topics and discussions here over the years and it has been invaluable in helping us to map out the best way to support our son. Thank you!

we did Ds's ados privately along with cars2 and adi-r
went to see nhs paed yesterday and asked that we still go though the nhs channels and get the nhs dx. she seemed a little shocked that i wanted to do this, she said we already have our dx but its up to me how i want to go forward and that he would still be seen by cdac. i think the nhs dx is important aswell.
i hope you get it sorted.