Do we tell our DD she is being assessed for autism?

[lalalalaloo]

Quick one- DD is being assessed for ASD.

She's 9.

No one has told us whether she should be told about the process. She knows she is getting help for mental health concerns and has counselling.

Has anyone been through this?

Yes. When DS was assessed and finally diagnosed with ADHD he said he was so relieved to know what it was that made him behave the way he did.

'We are going to have a meeting with experts to help us learn what we need to practise next.'

Our DS doesn’t know, but he’s still only 6 (was 4/5 at assessment and diagnosis). I guess at some point he will need to know but I have no idea when. I’m most concerned about what his friends might do with that information. So I’m interested to know when is the ‘right’ time.

My ten year old niece is quite relieved to have a diagnosis and getting extra help with her needs. But only you know your child of course.

It depends on her and how she is likely to process that information. DS was nearly 10 when first referred and 11 when diagnosed and he knew what was happening and why. He is the sort of person who needs to understand absolutely everything and has a million questions, so not knowing the ins and outs would have unsettled him.

My son, same age, is currently being assessed, he very clearly has Asperger's but we never really felt the need for a formal diagnosis until the school suggested it would help him in secondary.
He isn't aware of the assessment/condition as we don't want him to feel that he is a problem in any way but we will start to introduce the idea as and when things come up in a natural way. That's the idea anyway. I don't think there's a perfect answer to this.

Yes id tell her. In a gentle age/capability appropriate way and maybe not mention autism yet.

"We are just investigating the way you brain/body works and to see if you find some stuff harder than other children. If we do this we know how best to make things easier for you"

I wouldn't mention the diagnosis yet because if it takes you a long time to get there or in turns out it is something else entirely you have to unexplain what you have already said.

Yes, absolutely do tell her.

'We think you might be autistic, but the meeting we are going to now will help the doctors decide. Autism could explain why you feel the way you do sometimes and if it's not that we will keep on looking to find out how to help you as much as we can'

One of mine was 8 when they asked me 'why do I think differently' - that was the cue for me to tell them. The other we suspected for a long time before anyone would listen. When she was 6 we told her she might be autistic like her sister but she was 9 before diagnosis came. The whole time we just reassured her that whatever problem she was having we could help with. Anxiety is a huge issue but when she finally got diagnosed and was able to fully understand herself she was a lot more comfortable in herself

What @Hazelnutlatteplease said is much much better then my words!

It depends entirely on your child.

I work with a teenage boy who took it to mean that he was stupid and weird, despite a lot of work to the contrary by his mum and those involved. His mum held it back for ages as she knew this would happen but eventually he needed to know.

Where I'm relieved to know I might not "just" be weird and my quirks have reason. And a teenage girl I work with who's under assessment for ADHD feels the same way.

Essentially, it's down to you to judge her response and decide from there. Which isn't particularly helpful!

We kept it in very simple terms when DS was getting assessed - the whole process took a long time though. He understood that the Doctors etc were to help him with his attention, concentration, sleep issues etc. He was diagnosed with ASD, ADHD, dyspraxia among other things.
We didn't give him his 'official' diagnosis until he was in secondary school, he's 12 now and doing OK.

I'd be guided by your child - if she has lots of questions then answer in an honest but age appropriate way.

Be very very careful about mentioning a diagnosis until you definitely have it.

It only takes one sly Google and your girl will have access to a metric ton of information, not all of which will be relevant to her and some of which she may find scary. And yes most 9 year olds will have sufficient computer access to do this, either at home or school or grandparents etc. If you do you do need to mention autism you need to add a warning about googling.

Also personally I'd want me child going into the assessment blind, not trying to second guess the answer. Especially a girl who is used to masking which does involve trying to second guess how people expect you to behave. In the experience of friends the tests are not ideal/less sensitive for those girls who are good at masking.

My ds was assessed January. On waiting list 3 years- already had a diagnosis of adhd, sensory processing difficulties.

He knew they were going to look if there was things we were not aware of. When his consultant told me he was likely to get tge diagnosis - he cried said his classmates would call him names. When he was diagnosed wasn't bothered.

Then last week asked if he had Autism or if he was going to be assessed.

I think if you are just starting the process say nothing but been assessed you can say they are wondering if you do so just want to meet you.

I didn't tell my DD, just that we were going to see if there was anything that might explain the things she was finding difficult.

Locum consultant then gave her the questionnaire to pass to me, she clocked the words and the googling mentioned above followed. Had he not done that, I think it would have been the right approach for her - as it was, it was distinctly unhelpful, not least as we still have yet to see a permanent consultant and get a DX.

I did what shitonthebloodything said for my DD. Partly because she needed warning of schedules and plans is not spontaneous. I brought it up naturally and vaguely, getting more specific closer to the date. The assessor told me I'd done it right.

Yes of course. They have an absolute right to know what’s happening to them. We told ours, slowly, carefully and answered all their questions.

Yes, tell her in an age appropriate way. We had to tell ds who was 5 at the time as he asked why he was going to the drs when he wasn't sick. There are lots of positive lovely books available as well to help introduce autism to your child.

Ok. She's the kind of child that will have a million questions, is very intelligent and capable etc.

I was more worried about disrupting the objective assessment because if she knows someone is coming/talking to her she will absolutely change her behaviour. She's very aware of some things.

I think we won't use the autism word unless she is diagnosed. She is under the impression that she is getting help with some things that she struggles with (making and maintaining friendships, thought patterns, trouble with dealing with change) and so she knows she has a 'nurse' and a 'counsellor'

Slightly different scenario for us as my dd was very little when our process started (15 months at first mention, 2 when referred, 3 when diagnosed), so we didn’t need to discuss why we were attending appointments etc.

However, we made the decision very early that autism would become part of our common vernacular, not something to avoid or hide from her. She’s almost 8 now and moderately/severely autistic with a moderate language disorder, but she knows she is autistic, is proud to be autistic and even with her difficulties can advocate for herself when she needs to.

I do struggle to understand the hiding of a child’s diagnosis, it’s an all encompassing, lifelong diagnosis it’s vital that the person primarily impacted knows about it. Imagine hiding a diagnosis of epilepsy, diabetes, mental health disorders etc, etc from the person affected, imagine the fear and confusion of knowing you’re so enormously and obviously “different” than most but having every one pretend your not, avoiding talking about it or having hushed conversations about it behind your back, surely that’s a recipe for significant mental ill health?

It's more (on my part) to shield her from worry while the diagnosis is going on. She has a severely autistic cousin and uncle and I would imagine that (knowing how she reacts to worries) this might kick off another anxious episode if she imagined that that would be something she could experience.

And I was worried about biasing the assessment if she knew she was being observed.

Definitely do not hide the diagnosis after you've got it and yes yes to it being part of the common vanacular once you do.

DD was diagnosed when she was 14. Her mental health was poor and she knew what the assessment was for.... after the diagnosis was given her mental health deteriorated drastically, to such an extent that she was an in patient in an adolescent mental health unit. Subsequently, she has told us she only cooperated with the assessment as she was certain they would not diagnose her - when they did she could not cope at all. She is 20 now and away at uni - she accepts the diagnosis and it helps her understand herself - it was a long journey to this point! We did not suspect autism until her early teens but I think if we had known she could have been supported better and coped better.

Thing is when they screen for autism they will be also checking for other stuff. Either directly, if its the fullest assesment it will have tests to rule out disordered language. or indirectly, because of the frequency if comormidity etc assessors should be on the look out for dyslexia, dyspraxia, audio processing. So it is entirely accurate to say they are trying to find all the things the child finds difficult.

I was open about the dyslexia early on because it was so bloody obvious by 6 that a very intelligent child was having all the classic literacy difficulties, and he found it reassuring that there was a reason why there was a difficulty. Diagnosed at 8.

The autism was less obvious, but I framed it as investigating why he finds certain things difficult. He was diagnosed just before 9 and I was astonished and relieved at how readily the consultant diagnosed him as he is such an effective masker and school don't see it.

He knew of it through school and I remember driving home from the appointment explaining it and likening it to me driving my car on autopilot without having to conciously think about much of what I'm doing (NT) When I get into DH's car, I have to adjust the seat, the controls don't sit right, I have to remember that my left side doesn't need to do anything. I'm driving. I'm just as good at driving, but it takes more concious effort to do it (and there might be some perks like faster acceleration) For DS, he's going through life doing the same things, but it costs him more in effort to create the same effect.

We are a happier family for knowing. It's eased his frustration and I know that he's a child struggling not a child chosing to act up (although had been shifting that way for a couple of years when it was emerging that certain behaviours were beyond normal range.

We are open about it and it works better for us. DS has autism to live with. Sometimes its obvious and sometimes it's not, but that is a part of the wonderful person that he is (if more than a tad frustrating at times )

I work in SEND - don't tell her before the diagnosis has been made formal, but agree it is a good idea once she has it.