Private ASD assessment advice

[Stirfriedrice]

I have some suspicions about DD (6) and decided to talk to a private clinic.

Just had a 15 - 20 min call with a psychologist from the clinic about our concerns and he said it's probably a good idea to go for an assessment. This will cost us £1,250 and will be based on 1 hour face to face with DD and a couple of hours remote discussion with parents beforehand.

Is this how a private assessment goes? I remember reading on here that you can have a pre-assessment to see if she meets the criteria and then decide to take it further? I just think it's a lot of money to throw right now especially that DD is not really struggling with anything (yet). Just has some odd ways about her that I'm concerned will become more obvious as she grows.

Any input will be very much appreciated.

To be diagnosed with autism those quirks need to be causing issues day to day. She needs to struggle with 1) social communication and interaction, this can vary from not seeing the point in small talk and not following conversations cues to being non verbal.2) Restricted repetitive behaviour, lining up toys, idiosyncratic phrases, hyper or hypoactivity to sensory output 3) behaviour must have appeared from a young age, 4) behaviours can not be better explained by other learning disabilities like global developmental delay

I would keep an eye at the moment and write down anything else that concerns you. There's no harm in parenting her as if she was autistic. Traits are likely to become an issue at the transition to secondary if not before hand.

In terms of private diagnosis that sounds cheap DDs was £2.3k, you have to make sure they follow NICE guidelines for it to be accepted by schools and the NHS.

Yes, I had an informal chat to screen whether it was appropriate but that sounds like what you have done with the psychologist. I would use a clinic that specialises in girls. The assessment is a long interview with parents taking a developmental history right from pregnancy to where she is now, then we did the ADOS assessment, the WISC V to see the strengths and weaknesses of her brain which tested things like verbal reasoning and working memory. It was the WISC V outcomes that were the most useful in understanding DD really although the autism diagnosis brought validation and understanding.

Hi, as you say your DD is not struggling with any aspect, you could postpone it. I got my DS diagnosed privately when he was 10 for no other reason than to fulfill the requirements so that he gets the relevant adjustments for the 11+ exams (extra time, rest breaks etc). I had a suspicion he was autistic since he was 5/6 but given that he didn't need additional support or adjustment at school, I didn't feel the need to get him diagnosed any earlier. Unless you see she would benefit from some intervention earlier (although there isn't much on offer in any case), I'd wait.

That sound very cheap to me. Make sure it includes the actual written report if you go for it. Have the school raised any concerns? If she doesn't need any intervention at the moment then I'd be inclined to wait. Like previous posted said make sure it follows NICE and is accepted by nhs. Also a hour face to face chat and a meeting before doesn't sound like much info

Thank you so much, I had no idea what I need to look for, this is very helpful!

I did hear assessment are closer to the £2000 mark or more so I know it sounds quite cheap.

Thank you, that's what I thought. The school doesn't think she needs intervention but they are keeping an eye on things. So probably best to wait. It's just this uncertainty is killing me.

And yes, agree with @Singleandproud, your assessments sounds very cheap. DS's assessment cost £2.5k. It was a 4 hour appointment plus questionnaires for teachers and parents to be completed.

Thank you. Yes, we started having suspicions just after she turned 5 (she was a totally typical child, with a typical development). She's doing great at school with everything so no adjustments are needs at the moment. I suspect HFA.

Thank you, that's very helpful to know.

Does she have siblings? The ed psych said had DD not been an only child she would have started to struggle well before secondary as siblings add a level of chaos and spontaneity that DD didn't have to deal with.

My DD was quirky but far more independent at 9 than she is now at 14. Puberty really makes the autism behaviours more obvious along with the added expectations of the teen as they get older. But life continues it just needs extra planning and more down-time.

What has made you seek assessment in the first place?

As you are in no hurry then start the NHS process which could take 2-4 years.

I didn’t go for a pre-assessment before DSs diagnosis but know others who did. It was an extra cost that didn’t seem worthwhile to me.

No, red flags here!

An autism assessment should be very indepth and include several hours of face to face meetings as well as hearing from parents or DH.

FYI: HFA and functioning labels are generally frowned upon. Low / High support needs or similar is preferred by most.

What was interesting in DDs assessment is that she was hitting 'extremely gifted' scores on most of her WISC V, the clinician said that her exceptional ability had probably masked her disability throughout Primary. You wouldn't have known but then her working memory and processing is slower so although she knows the answers to questions or takes her a minute for her brain to think it up.

Autism is often linked with challenging behaviour and PDA and meltdowns, whereas some children are excessively compliant and have shutdowns instead with no challenging behaviour.

Look at the Girls Network blog for more information on how autism presents in females

She seems to struggle with chaos, not necessarily noise. Hand flapping, although seems less lately. Zones out and can get in her own little world (although she's usually very lively/loud and social and has loads of friends).

Overall she seems different than the typical 6 year old girl, the way she talks, finds it hard to articulate her thoughts despite a great language development at an early age. Overconfident with adult strangers. Used to latch onto other parents in playgrounds when she was younger, but we didn't think of anything at that time.

She is perfection at school and very keen on pleasing her teachers.

I will be speaking to NHS as well.

My best friend went through a private assessment when her daughter was 2, and they said she was not asd. The same private doctor in the NHS said dd was asd when she was 6. She feels it was a colossal waste of £1k.

If you go to your gp, they can refer you to child development team and you can be seen by NHS.

Yes that's what I thought, hence my post. I'm very grateful for everyone's advice x

When my DS was assessed it started with them watching him playing with his dad and he played with the psychologist . Then on another day they went into school to observe him for a few hours in the school setting and then spent time with him and did some tests with him and then a one on one meeting for two hours with us followed by a follow up meeting.

That's exactly what I am concerned about. Wasting money to be told perhaps she's fine, only to go for another assessment in 3, 4 years time.

Alot of what you mention is quite normal for asix year old and may outgrow those quirks, so I'd definitely wait a bit.

DD is fine with noise that is expected eg a show at the theatre, she's fine with chaotic noise that washes over her IE the chatty interval noise, but if you try to talk to her with chaotic noise she's overwhelmed as she can't focus. Same with the hairdresser's - hairdryer noise is fine, hairdresser talking over the hairdryer is not. And then there are hand dryers which DD believe are the work of the devil.

DD always just speaks formally to everyone, she doesn't change it depending on talking to a child, her peers or teachers.

Ours was a lot more involved. They sent questionnaires to the school weeks beforehand for the senco and DD’s teacher to fill out. I then attended a 1.5 pre consult session without Dd. From that we discussed if it would be helpful for Dd to get a diagnosis. Then we had a three hour appointment with a psych team and salt for Dd in one room. Meanwhile I was in an adjoining room with another psych who went through DD’s developmental history. After this I had a 1.5 hr de-brief session where AuDHD it was confirmed. All in for ADHD and Autism it was 4k.

It’s a lot to go through emotionally and mentally more so than I’d really anticipated. My advice is unless she really is struggling socially or at school I’d leave it for a bit. When you will need it is before the Y7 transition and I think by that age differences are far more noticeable particularly with girls.

Thank you for sharing that, very helpful.

Can i ask who you used for the private assessment please?