Can you talk to me about how ASC diagnosis (or not) helped your teen?

[parrotonmyshoulder]

I’m struggling with a decision, that will ultimately be DD’s, about whether to seek assessment for ASC. She is 13 and has shown strong signs since toddlerhood. Through the years I’ve prevaricated, been put off by all sorts of people, told I’m over thinking, biased (I work in SEN) etc.

DD is now struggling more and more as the pressures of secondary school and adolescence increase. We’ve moved schools to one which is much more supportive but she continues to find things really difficult. Social anxiety, hates being noticed, struggles with expressing empathy and perspective taking, rigid thinking, lots of other things.

My question is, how did a diagnosis help your child? Did it give them an understanding and acceptance of themselves (longer term) or did they see it as a negative.

Discussions with DH (who doesn’t notice any issues and has hence been part of the problem for 13 years) are yet to come, but I wanted to hear some experiences.

@potsandpots79 Sorry to hear your daughter is going through the same thing. Sadly my daughter is off again this week with burn out. The last few weeks it has been impossible to wake her up for school and she's been doing part days but we've got to the point where she needs more rest. Sorry this isn't filling you with positivity, but we are learning as we go along!
The school have on the whole been great. While they don't necessarily 'get' autism they have generally been quick to react when I tell them things are working for her ie working in a group with pupils she doesn't know. They understand when she misses days as she is a studious pupil when she is there. She cannot manage all day every day and they seem to accept that. It is a small school whereas her previous one was 1000+ pupils where she wouldn't have coped with lunch or large classes, assemblies etc. Most teachers have adapted to how she learns - one teacher sadly was an exception and everything was taught verbally which she couldn't process. However the others provide lots of written notes and check she is understanding it. She is now on ADHD meds which have helped enormously, but she is now having to catch up with subjects where she didn't manage to make notes. I would advise you build a good relationship with the SENCO or look for another school where they take it more seriously otherwise she will not survive.
DD's issues now (I think) are more beyond teacher's control ie her sensitivity to noise, friendship issues where its all very shallow and she gets upset by that, boys who are very vocal and with disagreeable views. The social side takes it out of her, but she loves being part of a school and with other people - we're trying to work out how to help her get a better balance. We're meeting with a potential new counsellor later today.
Sorry that you are scared. We make the most of when times are good, but the potential for the bad times is always there and we're adapting to that slowly. We have now accepted it is part of our life now. Fortunately I have a good friend going through a similar situation and we lean on each other. I'd advise you to find a good local support group - it isn't such a lonely situation then when you find others going through the same. Please get back in touch if you need to - I've been through quite a lot by now!

Gosh that's so kind thank you. It is all taking its toll and I don't have any local support or many friends so finding it very hard.

That is really hard @potsandpots79 , I think that we as parents need support ourselves so that we can support our young people - you can't pour from an empty cup etc. I am currently at university and have been able to access some counselling for me through the student wellbeing service. Might there be something through your employer?

I find myself limiting who I share this story with in RL, mainly as I want to give DD some privacy, but also because I can't always deal with others reactions.

@potsandpots79 @RhinestoneCowgirl
Yes, it's really tough. I was so relieved when I started to meet other parents of ND children because even though their experience might not be exactly the same, they knew what you were going through. When you have a child for who a success is getting out of the door that day, you find you have nothing in common with someone whose child is going out winning prizes, getting a job etc. Up till then all my local friends/acquaintances were mums I'd met at the school gates. I'd really recommend searching for a local support group.
There are also some good facebook sites such as Parenting Mental Health (excellent - as is Suzanne Alderson's book Never Let Go - who started the site), and Not Fine in School website and facebook. There is a shocking number of parents in our position and you don't realise until suddenly you are part of the club.

We've just had our GP appointment, after an excruciating couple of minutes on the phone (DD went almost completely silent, GP hadn't read the CAMHS letter), the GP relented and asked us in to the surgery for face-to-face which was much better. We now have initial paperwork to fill out.

@RhinestoneCowgirl Glad to hear you've managed to get started with the first steps. These telephone appointments are no good for my daughter either.