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Starting the diagnosis process with DD

(8 Posts)
CuppaSarah Wed 24-Aug-16 10:18:26

After a bit of advice really and support from people who have been through all this. DD is 3 and showing a lot of signs she's high functioning autistic or Aspergic. My sister is high functioning autistic, so it's also in the family. Been to our hv who did a questionnaire with me, but seemed really dismissive. It didn't help that DD was on good form that day and seemed totally nt(apart from her American accent she adopts when she's being social) of course once we got home she was very destructive and upset as she'd had enough of being social and was totally overwhelmed.

Had a message yesterday from someone, who had a meeting with my health visitor and wants to give us feedback. Haven't been able to get through to her and I'm terrified DD is going to be dismissed. The woman said she was part of the MBA or MDA team, if anyone knows what that is?

I'm so worried DD will be dismissed like my sister was. My sister has been through so many mental health issues and struggles she didn't need to in her life because she hid her autism so well. I don't want that for DD.

Meloncoley2 Wed 24-Aug-16 11:44:28

Would it be MDA? Multi disciplinary assessment?

CuppaSarah Wed 24-Aug-16 11:56:52

That sounds very possible! The questionnaire we filled out with the hv was for multiple professionals, salt, physiotherapist etc.

Ineedmorepatience Wed 24-Aug-16 14:24:59

You are right to push for an assessment. Dont panic if this referal doesnt succeed girls are usually diagnosed later than boys but that doesnt mean you should accept that. Keep pushing, keep a diary of her difficulties.

Good luck flowers

Waitingforsleep Wed 24-Aug-16 19:55:38

Can I ask how she presents?
My Dd is 8 and I have been dismissed for years, been In the system since she was 2.
I'm sure
My sister has Aspergers although undiagnosed but other mental health problems. Just curious and how you would describe her may help others to point you in the right direction to help you get the Drs to listen?

CuppaSarah Wed 24-Aug-16 21:31:38

Waiting that'd a good idea, I still struggle to articulate it myself. The main thing is that she only very recently could play with peers, she could only direct play before if she bothered at all. But if she plays properly she gets overwhelmed very quickly and becomes aggressive and distressed and needs to go into a quiet dark room to kick the mattress and scream for a bit to get herself calm again.

She tiptoes and flaps when caught off guard. She only makes eye contact when she's talking to you using quotes from tv she's watched. She mostly communicates by mimicking what she's seen on tv, hence her American accent. Her speech is very rarely spontaneous and when it is, it's often very jumbled up and doesn't quite make sense, but jist is there. But she'll avoid speech whenever she can, favouring gestures.

When she's in mimicking mode you would think shes nt but the accent, over the top gestures and the slightly out of context phrases give it away to those that know her. People that don't know her just think shes a very intense, sensitive child who just has very strong emotions.

She doesn't cope with routine change at all, she needs to go over it again and again and gets herself so anxious about any changes. She also has a lot of rituals that we need to do which seem tied into the anxiety. Things like lining all her shopkins up on the edge of the bath and one by one pushing them in, or reciting one specific scene from frozen every night at bedtime, every bedtime. If you don't play ball it ends in massive, aggressive, tantrums.

But despite the social, speech and emotional issues she's quite bright, she's taught herself to read quite a lot. Her memory is amazing, she can count to 15, knows the alphabet, colours, shapes etc. Her more academic milestones are spot on.

To be honest I've been suspicious she was on the spectrum very early, I would have started the process a year ago. But as ive worked with special needs children I assumed it was the 'burden of knowledge ' makong me paranoid. But since her difficulties are only becoming more apparent over time Im pretty certain I'm not jdut worrying needlessly now.

ConstantCraving Wed 24-Aug-16 21:43:53

Cuppa she sounds just like my 6 year old DD - right down to the hand flapping, mimicking and the American accent! She also has an amazing memory and read early and had lots of words (but little understanding). She was diagnosed at 5 with ASD and then with a specific language disorder. Like you I was worried she'd be missed - I kept a diary of everything I thought significant and also recorded clips of her running through her routines (e.g. lining up her toys and describing them over and over) and sent them to the team as I was worried she'd mask too well on the assessment day (she tried but apparently still ticked all the boxes). Good luck on your journey.

CuppaSarah Thu 25-Aug-16 13:36:40

Constant it's good to hear from someone whose child is similar, it feels so isolating sometimes. Especially with it being invisible.

The woman got back in touch today about what's happening next. She's going to observe dd at preschool and has told us we will have a meeting with someone after regardless of the outcome. But the observation will determine who and what the meeting is.

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