DD on the waiting list to be assessed for ASD.

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I know it can be a long wait, I’ve waited many years already and DD is now a teen. I’m just wondering what will be needed from us as her parents at assessment? Should I spend some time writing down my concerns, examples of situations she struggles?

I’ve completed the initial paperwork and the school have and we finally have some school senco involved for September, I’m just wondering what they will need from us.

DD has a diagnosis of ADHD which she has chosen not to be medicated after trying it during school hours and not liking the side effects (appetite mainly)

Should I spend some time writing down my concerns, examples of situations she struggles?

I always take notes for assessments etc. as on the day I'm liable to forget important points.
Jot down any differences with her peers, any differences with behaviour, socialising, communicating day-to-day etc.
It's always hard to do because what we see as our ordinary day to day family life can really be full of adaptations we've put into place over the years to make family life easier all round.

Also take or forward her ADHD assessment as there could be some observations in there which overlap with ASD. Bear in mind that girls with ASD can present very differently to boys, whoever is assessing her should be well aware of that.

Fingers crossed you don't have to wait too long, keep chasing if you need to and if it's suitable for you both, let them know you can take someone else's missed appointment.

It's always hard to do because what we see as our ordinary day to day family life can really be full of adaptations we've put into place over the years to make family life easier all round

So very true. And we don’t socialise with others so I have nothing to compare situations to but I do know the main reason we don’t socialise/holiday is because we have struggled so much so it’s a sad no win for DD.

I’ll ask for a copy of her ADHD assessment, thank you again because I wouldn’t have thought of that. We do have support from her senior school, budget permitting.

It’s true, I do forget what the early years held for us as we now just manage the teenage years.

Is she going to have an ADOS assessment? My dd had one when she was 14. It was carried out in a diagnosis-only clinic - no ongoing support of any kind and they only met dd for the assessment. They had already seen the ADHD paperwork as were able to access it via their computer. I filled in lengthy forms prior to the assessment, as did her school. We watched a SALT carry out the assessment through a special mirror - I did not know that would happen and dd was not told; she was livid when she found out. After the assessment, dh took dd home and I met with the doctor, the SALT and the SENCO from her school. We clarified some information in the forms and they asked some follow up questions about the assessment, the ASD diagnosis was given verbally and a report followed about a month later.

Unfortunately, we later found out that dd had only agreed to the assessment to prove everyone wrong! She has really struggled to come to terms with the diagnosis and has had severe mental health problems (bad enough to be admitted to hospital). She is 17 now and doing much better but it has been a rough 3 years!

We watched a SALT carry out the assessment through a special mirror - I did not know that would happen and dd was not told;

That is awful and no wonder your DD was livid, I can’t imagine how my DD would react finding out we had watched something she thought was private. I’m pleased your DD is now doing well, it’s a rough enough road with out diagnosis

The letter we received said it is an ASD assessment and also said that as DD is refusing to take her ADHD medication they have removed her from any further assessments.

DD said wants to be assessed, she knows I have been asking since she was little, it’s just a shame that it has taken so long to be listened to. I just hope a diagnosis may help get some support for her GCSE years, she has spent most of her early years in isolation, sat outside the heads room or not at school at all.

Did she try any different ADHD medications? Dd did not get on well with the first one but takes Elvans now and it has made a huge difference - concentration improved and so did her impulse control. She also takes medication for anxiety (Citalopram) and the combination of the 2 have really helped her.

She tried a couple but sleep and lack of appetite were really effected. She has an obsession with the gym (same time every day & same routine) so lack of above was a problem for her. We also have melatonin to help with her sleep.

DD only took her medication for school hours so once she stopped taking it they changed her rota around to more 1:1 where they could and it seems to have worked out ok, The school have been great where they can help and fingers crossed DD isn’t struggling with MH at this point, she enjoys being alone and has 1 close friend at a time.

It breaks my heart watching her older sister socialise in large groups with party invites and lots of meet ups but DD says that’s not what she wants and is happiest at home in her room doing her thing. I give them an allowance, DD saves up for fancy Gym wear and her current obsession with make up to do contouring and hair styling.

I’ve not heard of Elvans, we started with one type and then a new slow realease with a top up at lunch time to help her stay in school all day instead of being excluded for the afternoon sessions. I just worry because it’s GCSE timetable next year but hopefully she will have her ASD assessment by the end of this year and we will know more then.

Thank you for replying, it’s a lonely time