Daughter with OCD and request for accommodations refused by uni - what now?

[vivariumvivariumsvivaria]

DD1 going off to do zoology at uni in September, she'll be about 5 hours away from home.

She has been unwell with generalised anxiety disorder, related to OCD, related to (probable) autism. She refused an autism assessment as she felt that would pathologise her passion for her subject, but her psychiatrist and psychologist both think that the root of her anxiety is neurodiversity.

She took a year out after school in order to get well and work and has done really well, the suicidal ideation seems to be under control and she has really worked hard at getting well and uses exercise and her experiments at home to manage her symptoms. She is ready to go back to learning and looking forward to her course - I'm sure that the course and the uni are right for her. I'm hopeful that being amongst people who "get" her niche interests will be really helpful for her to find her place in the world.

She is moving into halls and wants to take a small vivarium with an small species of lizard. The animals act like a touchstone for her mood - they aren't pets, she is meticulous in studying and recording their their behaviour and their environment. The tank is a little planted eco system, the whole thing is her version of mindfulness. The tank is 45cmx45cmx45cm and does not need a heat pad or electrical equipment. She has several large tanks at home, this small species were chosen 2 years ago specifically because they don't need much space and would be suitable for taking with her to halls.

Uni refused her permission to have the tank two weeks ago. This has set off her anxiety, she's back self harming and is saying that she'll go and study anyway but I can see her spiralling again - and the idea of her struggling with the sort of intrusive thoughts she had previously when so far away from home, well, I'd fret that she's not safe, she really was very poorly.

I think she needs to write back to the university and properly explain that this is not a self indulgence but an accommodation for her mental health condition - albeit a strange one. I don't think she adequately explained the reasons behind her request. She doesn't want to make a fuss. I don't think she will cope as well at uni without having one of her animal projects with her - it is both part of her condition and part of her solution.

I want to speak to the uni and advocate for her, but I know I can't interfere with a young adult's problem - I don't want to be That Parent! I'm worried that she's not going to be able to articulate the importance of this tank because she's a little embarrassed that it is so significant to her, she isn't really able to explain to a NT person WHY this project is so important to her, it just is.

I am sure that if she could take the tank she would manage the inevitable anxiety that her first year at uni will bring.

I'm worried that if the refusal has made her so stressed then perhaps she is not actually fit for going to study? Her psychiatrist is happy with her progress and only has a phone review planned in a fortnight before discharging her. IT's only been a fortnight though, so it might be that she can manage the spiral - but, she uses her animals to do that and so the thought of not having them available is heightening her anxiety. Catch 22.

She has to arrange an appointment with the DSA assessor at uni - is anyone able to advise whether it is even worth pursuing the request, whether the DSA is the best avenue to try and whether there has ever been flexibility granted for having an animal (no fur, no mess, no smell, no escaping, no electrical equipment, no noise, you can't even see them because they hide all the time and are very dull if you ask me) in halls?

She's a born scientist. She's exactly the sort of student that tutors want to have on a course - she's bright and motivated and keen. She's also going to permanently have to work to manage her intrusive thoughts, anxiety and sense of being a square peg in a round world - obviously I think that a tank of lizards is a good solution!

My DD has just finished a degree in Zoology and told me that one of her friends did keep snakes in a tank in halls during her first year and used to put it under the bed during room inspections. I’m sure that the staff on the course would be really supportive of your daughter and actually very encouraging of her interest and would be happy to help. All the best to her.

@lemonbiscuit

My DD has just finished a degree in Zoology and told me that one of her friends did keep snakes in a tank in halls during her first year and used to put it under the bed during room inspections. I’m sure that the staff on the course would be really supportive of your daughter and actually very encouraging of her interest and would be happy to help. All the best to her.

I'm afraid my dd would have had words as she's totally phobic about snakes and certainly wouldn't want them in her halls.

I’m yet to see a room in Halls that would have space for a 45x45x45 box

It's well worth flagging herself up to the ASD team in the uni as well - even if she doesn't want to go through the full diagnostic process. I'm not currently diagnosed (I'm on the waiting list for an assessment), but they are happy to support me and advocate for me as if I had the formal diagnosis based upon their initial screeners. It means I've got a named point of contact I can get in touch with if I need to, instead of going around the multiple different people within the uni disability services.

They also made sure to add a mental health support mentor into my DSA (I'm dyslexic so get funded software for that - I didn't bother with the DSA laptop as I like my own) package so I have that regular check-in in place too.

Thanks all.

She's much happier again, seem that giving her control and chatting through all the possible options works for her!

She's decided not to pursue trying to get animals into halls - for all the reasons given on this thread.

Still refusing the ASD assessment. She points out that most of my inlaws and her dad are a bit quirky and feels she's not going to learn anything more from having a formal diagnosis.

She is protective of her passion for reptiles and does not want it being labelled as a symptom of ASD, she thinks it will belittle it. Which I understand, and I expect that once she's at her course she will be surrounded by people who "get" it, presumably most people who are drawn to an undergrad in a specialism have a common interest.

Must admit, I'm learning a lot from her, she's much more wise than I was at 18. She is very good at setting boundaries - and has shown that she can let stuff go too, I'm not so good at either of those!

It was a rough few weeks but I think she's managed it pretty well, she's back exercising and prioritising her sleep and mindfulness, self harm seems to have stopped and was not as intense as it was previously, and she's talking about using propagating her plants for mindfulness instead of the animals. Which is encouraging, that's flexible and resourceful and is within the rules of halls. Much easier to fit in cuttings and plants in pots too, and she'll have to collect rainwater for some of the more fragile ones that she's growing here, it'll be suitably technically challenging to use as a tool.

I'm feeling less worried about her. She's going to have ups and downs but if she can recognise a blip, seek help, use her strategies and accept that things don't always go your way then maybe she'll be ok

She's going to email uni and get me set up on the Right To Share scheme which is a HUGE relief to me. We get on pretty well, and I try not to fuss, but I'm really worried about "what if" and it's reassuring to me that uni will be able to share info if need be.

PP had asked what I'd have done differently, I'd mentioned my regret that I'd not realised her challenges. TBH, I'm not sure I could have done much differently, which, I try to remind myself of when I'm wallowing in Mum Guilt.

She is a good example of masking - none of us had any idea that she had intrusive thoughts. She said she was 12 when she realised it wasn't normal to hear voices and that's when she started having suicidal ideation. By 15 she was self harming significantly, she is covered in scars that are from wounds which should have been stitched, and somehow she managed to conceal it all. Her scars are marked and she won't be able to cover them with just camouflage make up because many are raised because they weren't managed, but she will have to find a way to accept that, she is very self conscious about her arms and legs and I know she also has scars on her torso and hips. It makes me so sad, she is so beautiful and I wish she'd be able to get her body in the sun without feeling self conscious - but, then again, they are only scars and it could be a lot worse.

A change in PE facilities meant a girl in her class saw her scars and told a teacher, and that was the first any of us knew. When school phoned I said they must have got mixed up and were telling me confidential information about someone else's child. CAHMHS waiting list was, well, as we know, too long so we threw money at it and got her seen privately. That was the best thing we could have done, it cost a fortune, but I have zero regrets. She's on sertraline and that has transformed her life. She still still hears voices but she says it's like they are muttering far away instead of shouting horrible things at her all the time and so she can ignore them about 80% of the time.

So, what I'd like to do differently was to not have assumed that my seemingly content, academically able, introverted but socially able if she had to be, funny, lovely girl was fine.

Neurodiversity can bring great gifts and great challenges, and I had no insight into it. I'm glad that at least I found out when I did because the consequences of dealing with her symptoms and limitations on her own made her very poorly. I wish I'd been able to prevent that, but, we are where we are and now she never needs to be in that situation again. So, there's that.

Take it and keep it covered when she isn't in the room? To be honest, students are only in halls for a year anyway

You sound like a wonderful mum

It's her choice about the autism assessment. But I do think it's a shame she won't consider it. IMO it's easier to get the right support if you have a formal diagnosis. For example if there is a possibility that she is eligible for PIP, an autism assessment report would be very helpful medical evidence.

It doesn't matter why she has a passion for reptiles, whether it's because of autism or not (I doubt it would be, obviously not all people with ASD love reptiles!), the important thing is that she is passionate about them and she can succeed in studies and career.

I think she will be successful but only if she has the right support in place. So I would encourage an assessment.

Has she (or have you) been in touch with the National Autistic Society at all? They have various helplines. I wonder if they could help her to talk through the pros and cons of an assessment, any concerns she has, and give advice about the transition from school to university.

Could she transfer to another university that is commutable? Halls / student accommodation requires a level of resilience that stresses most people. It’s definitely not worth undoing the amazing progress she has made for the sake of staying in quite isolating, not very comfortable and overpriced student halls. She can make friends on course and through sports / societies and then look to live with friends in 2/3rd year.

I wouldn’t consider a university 5 hours away if I had any inkling a DC of mine would struggle. Mine is 2.5 hours a way which is a trek but we can get there and home again to get him in a day in an emergency (which we have had two of this year!). My friend knew her DD would struggle to be away from home-had self harmed and was very anxious but wanted to live in halls, so they chose a university 45 minutes drive away. It’s been great for them.

You sound like a lovely mum - but I think you are both being very stubborn about the uni. 5 hours is a long way away.

The uni is a long way away but it's the only one that does her course as an undergrad. Most specialisms are post grads.

I do agree, it is a long way. But a closer uni would be a generic zoology degree, very few offer undergrad specialisms and only one in her interest. Lots of places do Masters in it, of course.

She's going to have to either learn to manage or stay closer and study for longer. Her choice is to go. I guess I have to just trust and visit a lot.

Might it be good to be more general?

I'm only banging on because your dd really sounds as though she's been quite unwell

I know, and I do like the idea of nice, broad undergrad degrees that you can do lots with.

She's autistic though, so while she's not stubborn or wilful and always has a logical explanation supporting her choices.. it can be, erm, a challenge to get her to change her mind. She decided she was doing herpetology when she was 10, she decided that she was going to save some ugly wee brown Amazonian crocodile that I'd never heard of, specifically because it was an unremarkable looking creature that no one else cared much about. She is very disparaging about pandas who get all the conservation publicity and are "too stupid to have sex to save themselves". She's got a point.

She's given up on having her lizards in halls which is a big concession. I really don't think she'd be up for giving up her specialism entirely - she'd see it as delaying her sorting out the Amazon.

Thanks, Lizzie and I appreciate your concern. I did breathe a sigh of relief when her diagnosis was "just" OCD because it is easier to treat than other causes of hallucinations.

It is rare, but yes, she has actual voices which range from whispers to screams and they are rarely silent. There is literature of sensory hallucinations from OCD in the journals (obviously, I found pub med and obsessively searched!). Psychiatrist said it is seen in people who also have vivid imaginations, vivd dreams, and who can see patterns in things that most people wouldn't notice - so the people who come up with innovations and create entirely new ways of doing things. She "sold" that to me as a potential positive of the combination of OCD and autism - she could clearly see a mother who was freaking out about "ohmygodmybabyishearingvoices" and knew how to head off landing up with two anxious patients! There is some sort of differential diagnosis between schizophrenia and OCD hallucinations, I'm grateful that the psychiatrist had happened to see it before and recognised my daughter's symptoms straight off.

The voices seem to be linked to her anxiety and compulsion to self harm. The sertraline has helped to shut them up and now that she knows it's a just symptom they no longer distress her. Just like that. She just accepted they were a symptom and so their opinions were no longer valid. Like a dimmer switch to dial down the anxiety. Amazing.

I don't know much of what they say, but from what she has let slip they sound vicious. I really want to meet her voices because I've got a thing or two to tell them...

It makes me sad that she has to put up with that. She does say that the sertraline has quietened them by about 90%, so are now just white noise in the background that she can ignore. I think that is one of the differentials, sertraline wouldn't be so effective in treating schizophrenic hallucinations (though it would help comorbid depression, but my daughter isn't depressed)

What she doesn't have is rituals, routines and the more common symptoms of OCD. She does have some weirdness around human "contamination" like food hygiene, hand hygiene and but it's not disabling. She is very careful with cleaning her tanks and washing her hands, but it's more thorough than obsessional. Weirdly, she is fine with picking up poo or rotting garden stuff or beach stuff with bare hands, though she wouldn't touch her skin or eat until she'd washed them - but, then, that's just common sense. She's got plenty of the intrusive thoughts and anxiety, the hallucinations seem like turbo boosted typical OCD symptoms.

I think that is why we missed it, she's not a common presentation of OCD and with the autistic-girls-mask thing, well, it was well hidden. Which is why the psychiatrist was worried about her, there is a small group of people with OCD hallucinations who take everyone by surprise by successfully ending their life, but who aren't depressed and wouldn't be described as suicidal. Fucking terrifying.

By the time it all came to light she had multiple items hidden in her room that the voices had told her to collect. That was quite the reveal, I was absolutely distraught but managed to not panic and just give her a hug and say "this was only a problem when I didn't know about it, thanks, for showing me. What do you want me to do with them? I'd rather keep them for you, best not have them in your room". God. Makes me cry to think about it. Poor kid. She was using the self harm to appease the voices instead of the suicide they were pushing her towards, she learned that cutting herself seemed to quieten them - which is why her scars are so bad.

Fucking hell. It makes me groan to think about it. It's so, well, demonic.

I just can't get my head around it, I believe her and I accept the psychiatrist knows what she is talking about and I am confident in the care she and the team has given my daughter - but, I'm not autistic and don't have OCD so I con't really understand. I can't quite marry up the way she has skipped off this morning, really looking forward to her day at work, with a lovely healthy packed lunch, plans for after work and offering help with a couple of tasks I have to do tonight - with the stuff she has told me that she has had going on in her head. Thank fuck for sertraline and very smart people who were able to help her. Thank fuck we found out. Thank all the fucks.

I hope your son is doing ok. It's a steep learning curve, parenting these kids, isn't it?