DD 16, OCD, GAD and autism - now what?

[vivariumvivariumsvivaria]

DD is bright, witty and lovely. She's also self harms, has panic attacks, intrusive thoughts and hears voices, and, it turns out, has done since she was 10.

After waiting 18 months on an urgent referral to CAMHS I got her seen by a private psychiatrist - who says she's got GAD probably because of OCD, probably because of her many autistic traits.

She's left school, got the exam results she needs for uni in 2021 (Scottish system). She's got a job for the year, has lots of plans and projects to do with her special interests.

Now what? I'm reeling - she's going to be living 8 hours away when she goes to uni. Does this mean she qualifies for extra help at uni?

The psychiatrist is lovely, she's suggesting sertraline trial and psychologist input.

I've got a year to get DD on top of managing the anxiety. I have no idea what to expect from uni, which seems to have good pastoral care. Does this diagnosis mean DD is disabled and can access the care? I wouldn't say that she is actually disabled - I think she's got mental health problems and now I'm not sure how unwell she's been and how much she's been masking.

I'm reeling a little bit.

The university will have counselling facilities she will be able to access and she will likely get a learning contract put in place which means the student support team and academic staff will be aware of her conditions and can make sure that appropriate systems are in place to support her with her studies. A lot of our students with anxiety disorders or autism prefer to sit exams in a separate room and may get extra time to complete assignments or automatic extensions when struggling for example.

Thanks, Zippy.

Uni website has a self assessment form - it mentions various types of support, mostly focussed on dyslexia.

She is going to need a bit of hand holding. Me too, really. Can't believe how hard things have been for her, I had no idea.

They’ll likely explain to her how student support works during induction. It’s worth getting in touch with them early on to let them know the situation and they’ll probably want to see a doctors letter to set the contract up. Once the contracts are in place they last for the entire time of study and cover lots of different situations. I have a student with GAD for example who doesn’t need to do presentations in front of an audience, instead she can record them at home and I can mark it that way. I also have another student with BPD and she isn’t marked down for attendance when she can’t make lectures or tutorials. I promise they will be prepared and they will have dealt with it all and much more many times before.

Amazing, thank you, Zippy.

She's very bright and will be studying her Special Interest (which turns out is a symptom) - she'll be a great student for them to have on the course.

And yes, she's going to be bread-and-butter level of hand holding. that's a really useful perspective for me, thank you.

I'm hoping that once she's on the course and mixing with people who are equally as interested in her niche, then she'll have found her tribe, and that is what leads to happiness.

DD can apply for DSA for help at university. I agree to discuss with the university's disability service.

It is important to clarify whether the psychiatrist is diagnosing ASD or 'just' 'autistic traits'. Some people find a HCP professional will diagnose traits but say a person doesn't meet the threshold for an autism diagnosis.

The definition of disabled under the Equality Act is a physical or mental impairment that has substantial and long term negatives effect on ability to do normal daily activities. Substantial means more than minor and long term more than 12 months. In order to receive an ASD diagnosis you have to have "persistent difficulties" that "limit and impair everyday functioning", so someone with ASD would be protected by the EA. Many people with GAD and OCD would too.

She did say, in the zoom call, that the diagnosis was GAD/OCD because of ASD. But, DD baulked at that, so, psych then used "traits" as language.

TBH, it's not a surprise. Her dad is trait central, as are his parents and 3 out of 4 of his brothers and most of her cousins.

Psych said that the level of anxiety met the criteria for sertraline without question. And, that the intrusive thoughts and level of disruption met the criteria for OCD. And that she had no doubt the reason for this, from the answers that DD gave, was ASD.

It's a good thing - she's only 16, so she will get help and strategies and be less bemusing insular than her dad landed up.

Thanks, 10, I feel a bit overwhelmed. Iv'e thought for years that her dad was AS, and have been wondering for a year about DD. I had no idea how widespread her difficulties are though. The first thing to do is reduce her masking, because she's bloody good at that.

We need people with ASD, she is going off to study Her Thing. She'll do brilliant things with Her Thing, I have no doubt of that. If she could just stop cutting herself as she does it, and have fewer panic attacks, and maybe sleep a bit too, that'd be great.

Sertraline is excellent for OCD. I’ve had it (OCD that is!) since I was 7 and until I started taking sertraline three years ago, it just wasn’t manageable. I tried, but CBT could only take me so far. It was useful, but sertraline has taken the edge off the OCD and anxiety and I’m honestly a new woman. Happy to talk some more about OCD if you’d like. I’ve also been a hearer of voices but that was depression with psychosis as a result of a mental breakdown, so not quite comparable. OCD/GAD are much more insidious and long term, rather than the acute distress of a breakdown.

I’m not diagnosed with autism, but I do share quite a few of the traits, so can chat from my perspective on anxiety and non-neurotypical thinking if it would help?

Oh, Oriflamme, thank you!
I know she's had this a long time. She's unable to pinpoint times and events - but, she's the eldest of three kids and the middle child was very unwell around the time she started having intrusive thoughts which suggested self harming. So, it's all very vague, and realistically, it was a complex time when she was young and she wants to protect me from the guilt of neglecting her while her brother was so poorly. It's all lucky white heather stuff, I did the best I could at the time - and, I expect there is fall out from that for her.

I was quite afraid about the hearing of voices- I'm trying really hard just to nod and not blink repeatedly with a rictus grin on my face, this is totally outwith my experience. She describes the voices in vague terms, her name repeated aggressively, warnings that if she articulates what she thinks then it will come true. Seems to be worse in situations with lots of sensory stimulation - like school corridors between classes she'd hear her name being called with commands to injure herself.

Psych said that there is a problem with people with ASD and CBT - if you can't easily access your feelings then how can you recognise them and be expected to adapt them? Makes sense. Her suggestion is sertraline and then CBT.

I'm so neuro-typical it aches. That AQ test thing? I scored 4/50. DH scored 46/50. I see emotions in other people, I feel them and absorb them and understand them - all instinctively, and it is quite tiring, actually, while DH is, erm, different.

I want to get this right for DD. My emotional incontinence was Not Great for me at her age. This is the same thing, just a different end of the spectrum that I read so much I hear about. I absorbed my friend's pain and issues and got bogged down in stuff that wasn't mine - because of the way I am wired. I don't know what the opposite of autism and OCD are, but, I probably am it. Her dad on the other hand...textbook high functioning autism and I'm not even joking. Between us we should jigsaw perfectly, but, it's not perfect, it's two people perpetually misunderstanding each other and who have had 3 kids who are their own folk. I won't let her muddle along for 30 years before thinking "fuck this, I'm fine, just not average"

She's so cool. She's bright, and funny and gorgeous, and she has urges and voices and passions for the things that most people don't even notice. None of these are bad things. They are just things. I am honestly excited to see what she does with her things.

I don't think that hearing voices or having urges means life will be hard. I want her to be happy.

Isn't that what we all want for our kids?

I’m on holiday at the moment with terrible internet connection, but PM me and when I’m home I’ll be really happy to chat with you about everything via PM! Take care x