ASD diagnosis for my bright nearly 4 yr old girl, a little shell shocked

[SexDrugsAndABriocheRoll]

First social com clinic appt, I've accepted she is for a long time but wasn't pursuing a diagnosis as I thought the hoops/ arguing not worth it. Plus I'd taken her out of nursery/ not applied to school to further hinder the process. Just my report, SALT we'd never met there and a consultant we had. I'd been referred from another hospital clinic, but actually refused the assessment. I'd been railroaded a little into it after a home visit. The opposite of all the stories I hear of people fighting for assessment.

In the last 6 months her language as gone from near zero to quite advanced suddenly, so disordered and odd but not delayed. So quite far now I think from how people imagine autism. She is though obsessive, struggles with communicating effectively etc to quite an extreme point (eg askes for a Kinder Egg whatever her need is hungry/ thirsty/ tired/ wants to go home). I think I find it hard to recognise at times, I relate to her and I forget what others consider odd just isn't a worry in our house as much. Her behaviour is mainly hyper good, though she will repeat stock phrases to the extreme until YOU scream.

They just believed me, didn't even send me out to confer about it. Bang, straight out pretty quickly (she does have a long history of contact to look at from other services). Talked about her being a high-functioning girl and the type to be missed.

I'm just a bit wow....no barriers, no fuss, lots of support offered (not sure if for me, but offered).

I'm also confused, I feel it's so much on my words, I did confer with family and tried to be very factual... but you just end up doubting yourself. Such a big thing to suddenly process, from very quirky to formal diagnosis and the change in how we are seen.

I'm waffling....

[snowdrop2011]

Hi SD&ABR...sorry to hear you've had a tough day - and thank you for posting on my post :)
I can completely relate to how you feel about your little girl in that you understand her completely and sometimes forget that other people might not. I fee like I know my daughter as well as I know myself. She's my PFB and has always been so attached to me. Our family doesn't socialise much with other families (especially not with ones with kids her age) so she is like the queen of her little domain and she's always happiest at home.
Why were you not keen on having a formal diagnosis made? Do you feel like it is a negative development? Do you trust the people you met who did the assessment?
I hope someone else with experience of the system can come along on this thread to give you some positive messages of 'what happens now' but in the meantime...

[SexDrugsAndABriocheRoll]

Oh I didn articulate well, I think I couldn't face the system rather than the diagnosis. The idea of fighting whilst already stressed, if I'd known it was easier I think I would have been ok. I wasn't in the headspace to share yet, it was a journey to realise it, I think it was hard never getting to the asking for help stage that most people do.

[SexDrugsAndABriocheRoll]

The consultant who did it is very respected and clearly knows her stuff- I wouldn't question that. GOSH seemed to see her name and comment when we were there in the past. She's just bloody difficult to converse with!

[tartanterror]

This was a bit like us. We'd been offered the assessment a couple of times as we'd had contact with SALT due to eating problems. We thought we would wait and see. At school, their rules on food clashed with DS' so we ended up at GOSH feeding clinic and they said they would support the idea of a referral when we mentioned it as a possibility. After seeing how CAMHS would put us through the ringer worked we finally accepted the SALT offer and had a Social & Communication Assessment. I prepared to argue our case and persuade them. On the day it was SALT and a paediatrician who needed no persuading. Compared to CAMHS we were treated with kid gloves! They said on the day that he met the criteria (although they had met him clinic and done school observations prior to the appointment, as well as having questionnaires from us and his teacher) and we'd get a letter in a few months; then we'd see them for follow up again in 8 months. That was it. We've since been offered the post diagnosis parenting classes which are painfully slow. The report said "we acknowledged X meets the criteria for Austism Spectrum Disorder" and then we had it in list form with a second item related to disordered eating. Odd mixture of relief and anticlimax really.

[SexDrugsAndABriocheRoll]

Oh thank you for posting! I end up feeling like a bad parent because I'm not fighting to help her or something!

Gosh feeding was discussed for us, how was it? How bad was your ds with food to warrant it. Dd is no longer unweight because I gave up the will and let her guzzle milk all day lately which I must sort and at the 25% centile

[tartanterror]

Yes after all the stories I found it all odd too and quite different to other local parents. I worry it was too easy or the wrong answer! But I think when eating habits are so very extreme it get's attention as an ASD red flag.

GOSH feeding is not a magic wand but they understand our problems and have been very very supportive. DS had dropped down from 40th centile to 20th due to problems with school rules. However I imagine that you'd qualify with ASD plus milk/liquid diet? Call up the feeding team secretary to get an opinion if you are not sure. Who suggested it to you? Can they refer direct? We had 16 weeks to wait from GP through CAMHS to get to GOSH which was really stressful as he was in bad shape - the GOSH part of the wait was only 3 weeks or so.

Once at GOSH they do a very full assessment and video a family meal. Then you go back after 7 days for a feedback meeting. We then had a pause while we waited for the S&C assessment results locally, then we have had parent counselling on strategies for home. They don't do in clinic work with ASD kids as they tend not to generalise. Not masses of new techniques if I'm honest but it's been useful to have moral support and also when outsiders try to minimise our difficulties, being able to say GOSH is a shortcut way to get support and understanding- particularly in school.

[SexDrugsAndABriocheRoll]

Her diet is improved. She will taste/ spit quite a range and eats: milk, strawberries, some toast, chicken nuggets, homous, bits of pasta and peeled apple. So not totally liquid but small amounts. She eats better out of my handbag and outdoors eats crisps. I don't know how school will go as she never eats meals.

I keep worrying it's an answer too! I feel awkward telling people as those who see her occasionally and in family groups I think wouldn't believe it. You need to see her a lot to piece it together and with 1 child she. Superficially plays beautifully.

[SexDrugsAndABriocheRoll]

The consultant did say she could refer- we will discuss at follow up. I was too talked at to process it all

[SexDrugsAndABriocheRoll]

School could produce a "shy" girl or cause a freak out- I may home ed but I'm really conflicted as to what's best

[tartanterror]

If you are happy to home ed then it's a great solution and in London there's a wide support network - people often opt out because they/their child doesn't fit into the system so "quirky" children are the norm ;)

On the other hand if you feel her issues are subtle, you might manage a few years at school to see how it goes before taking the plunge? DS has managed to learn some social skills when things have got a bit painful with children he really likes. It's difficult to find a balance between having high expectations and providing enough support..... if you figure out the answer to that please let me know!

[SexDrugsAndABriocheRoll]

I home ed older ones! But they did the eyfs with play bit of school. Yes quirky is normal....

My sister has similar difficulties, she reckons home ed but I'm not sure!!!!