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Re-evaluating in light of possible ASC
SoletstalkaboutBruno · 22/03/2022 12:07
Hello. Hope it's ok for me to be here. I've namechanged because I'm not sure what I feel at the moment and more anonymity is attractive. Do you mind bearing with me through a longish post? It's about me but we have to talk about the DC to get there.
I have three DC. DD10 had a GDD diagnosis at 2.5. Now we're calling it a learning disability. Was previously told by paed there is 'no point considering whether DD10 has ASC because she has a very very low IQ and that's the thing that will define her.' ALL OF THE EYEROLLS. But now we're in a new area and all teachers and professionals are once again asking 'Does DD10 have ASC?' and it seems worthwhile going through the motions again to see if we can access assessment.
Meanwhile. DD3 has been flagged up by new pre-school for possible signs of ASC and so we are in the middle of a referral to community paed to discuss assessment.
Therefore. We've also now started discussions about assessment for DS7 who seems very likely to end up with a diagnosis along the lines of 'high functioning ASC'. I know the 'high functioning' bit is questionable terminology but it seems to be literally true as regards his IQ and useful at the moment to distinguish his high academic achievement from DD10's rather different experiences.
So.Let's talk about Bruno. Being me. Somewhere in the midst of all this DH and then I said, Oh, hang on. Does Bruno have ASC? And the more I think about it the more likely it seems. I think I have some hella good coping and masking strategies, some of the time. But I think they are strategies. I never really had friends til I was about 17, then I started figuring it out a bit. The social stuff just never really clicked for me. I was always 'smart', academically. Always talking some adult's ear off about all the new information I'd recently learnt. I was always very rule-bound. I really struggle with changes of plans. I think it would be fair to say that I have melt-downs. Real embarrassing screaming shouting breaking things ones. Not for about a year at this point, but the last one was pretty terrible. I am perceived as a very 'organised' person in the workplace but I think it's all a memory trick. I struggle so much to maintain it at home - laundry, school admin, tidying, cleaning, planning for weekends and holidays, meal-planning, cooking. I have been diagnosed with depression several times but the meds never worked. I struggle with starting a task anywhere other than the absolute foundational beginning point and with completing it in anything other than the perfect ideal logical order, however time-consuming.
I guess I'm curious, given that you folks have experience of being neurodiverse and that perhpas some of you have neurodiverse DC, whether any of that sounds familiar? Whether that sounds like a mum with ASC or a mum failing to cope for whatever reason with life generally? Does it sound like I should pursue assessment? How on earth does one do that, as an adult, given the struggle to assess DD10 who is a child still and with obvious needs? Are there online assessments that are worth the time? Is there any use to pursuing assessment, or will it just make me feel bad to think that in fact I was struggling more than I realised back at school/uni/as a new mum?
Thanks if you've read this far!
SoletstalkaboutBruno · 22/03/2022 12:55
I forgot to add, there's a whole tonne of sensory stuff. HATE the feeling of my hair being wet against clothing that isn't a dressing gown. CANNOT put on tights if I shaved my legs that day. Rules about what textures of clothing can be worn where. Can't have a conversation while brushing my hair. Most of this I have work-arounds for these days so it's not noticeably odd but it can and has interacted catastrophically with my need to do tasks in perfect sequence and my dis-organisation about household routines. I don't know...
LizDoingTheCanCan · 22/03/2022 13:05
A lot of what you've posted resonates with me. It's like the swan that looks so graceful but is paddling away so hard beneath the surface, and you never get a chance to stop paddling, but sometimes you end up with your arse in the air because the left leg doesn’t know what the right is doing anymore.
You can approach your GP for referral for assessment, the criteria will vary between areas. I was referred via a psychiatrist, they had to apply for funding approval, only then could I be put on the waiting list. I only waited around six months, but that was because I was already in the system. Others have waited three years, and I saw a GP post on here recently that they're not even allowed to make referrals. It's a postcode lottery.
SoletstalkaboutBruno · 22/03/2022 13:16
Thanks Liz, that's a good analogy. I think in the past I've always thought, oh I'm rubbish with other people. Oh, I struggle with my temper. I need to try harder. I'm not sure why it has suddenly seemed so obviously a sign of a problem rather than a failure.
I will consider asking m GP. She will wonder what she did to deserve me and my kids, all the paperwork we've generated for her!
Clarice99 · 22/03/2022 17:56
She will wonder what she did to deserve me and my kids, all the paperwork we've generated for her!
No she won't, that's her job! Don't be so hard on yourself.
Is there any use to pursuing assessment
I've seen a lot of mixed responses to this question. My diagnosis was life changing. It finally gave me the permission to accept myself and all of my differences. I used to mask so heavily that it made me really, really unwell. The day of my official diagnosis, I got in the car and said to my husband 'fuck it, the mask is off'. I felt so free. And still do.
The diagnosis also afforded me reasonable adjustments at work.
But the acceptance of myself - priceless 😁
SoletstalkaboutBruno · 22/03/2022 19:39
Thanks @Clarice99, I know what you mean. Actually though she passed me the referral paperwork for DD10 to fill out myself and hand back to her - it's a real slog!
About masking and permission. I have been unwell for a long time. Barely scraping by you know? I don't know if that has anything to do with ASC. I don't know what adjustments would help if I could ask for them. It's very new to me to consider any of it in these terms and I guess I need to work out what practical difference, if any, it might make.
Clarice99 · 22/03/2022 20:06
@SoletstalkaboutBruno
About masking and permission. I have been unwell for a long time. Barely scraping by you know? I don't know if that has anything to do with ASC. I don't know what adjustments would help if I could ask for them. It's very new to me to consider any of it in these terms and I guess I need to work out what practical difference, if any, it might make.
I was in a similar place, unwell with other conditions and feeling overwhelmed, not knowing what feeling was due to what condition. I'd constantly been fobbed off by doctors and psychiatrists telling me I was depressed when I knew I wasn't. I don't think I ever have been depressed. I kept on going back, asking more questions and not letting people defeat/browbeat/fob me off.
With reference to reasonable adjustments, while you might not know what you need, an experienced Access to Work assessor will know. The way forward with that is to self refer to ATW and ask for an autism specific assessment with someone experienced in autism in women. At the assessment, you would need to explain what you're doing well and what you're struggling with and the assessor will put a report together.
For example, my reasonable adjustments include flexible working, working from home, taking regular breaks, no targets (I work in a target driven department), information about meetings and training have to be supplied in advance. I also have an autism mentor funded by ATW.
I hope this info helps.
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