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Support for DD2 suspected ASD, what am I missing?

(16 Posts)
Woolfey Fri 11-Jul-14 11:48:43

DD2 has suspected ASD. I am completely new to this and am trying to get her as much help as possible. She is 2 and a half.

Seen GP, HV nursery nurse, SALT, Audiology. Are on waiting list for CAMHS (7 months wait) and a SALT ASD intervention team (8 months wait).

Have 2yr funding nurse due to come see me next week to try and get 2yr funding for preschool which she is due to start in September.

Just sent an email to try and get portage on the advice of pre school.

Obvs without a formal diagnosis it's hard to access much support but just hoping people on here with experience of it all will be able to tell me if I've missed anything?

Finding it all rather overwhelming tbh.

Mollyweasley Fri 11-Jul-14 12:02:05

Hi! You seem to be doing a lot already. The only thing I can think of is to consult an OT, if she has a lot of sensory issues.
It is overwhelming when the word "autism" is suddenly thrown in to describe part of your child's nature. I think that it is because there is a lot of misconceptions surrounding autism. I was overwhelmed too when DS was diagnosed 2 years ago aged 7, until I realised that I had ASD too ( I was diagnosed last year).
ASD is more and more known and more and more can be done to help people with autism wherever they are on the spectrum and I like to think that it is only going to improve!

Woolfey Fri 11-Jul-14 12:12:04

Thanks Molly.Is an OT an occupational therapist? I think she does have some sensory problems she doesn't like loud noises or busy places, doesn't seem to feel cold, likes jumping and swinging and putting things in her mouth.

zzzzz Fri 11-Jul-14 13:32:19

What would YOU (not nursery or HV or granny) say were the areas she struggles with most?
What is impacting her life most?
How old is your other child and how was their development?

Woolfey Fri 11-Jul-14 13:59:46

Speech and communicating are her biggest problems. She hardly talks. She hates social situations and any form of change. She has lots of quirks that I thought were just part of her personality but will become problems now that she is going to have to fit in with other children in pre school. Not liking to wear clothes or shoes, repetitive behaviour, not answering to her name, long list of others . Personally I think she just views the world slightly differently and I think I've tried to adjust things to suit her but until recently hadn't really noticed the extent of it.

DD1 is nearly 4. She had a very slight speech delay but it was completely different to DD2's. Preschool say she is ahead of her peers now and there are no concerns with her at all.

Mollyweasley Fri 11-Jul-14 14:15:03

yes OT is occupational therapy, really useful and in our area you can self-refer.

zzzzz Fri 11-Jul-14 14:19:53

Can she speak fluently at home?

Do you find her behind her chronological age developmentally at home?

Is the problem more ALL new things or SOCIAL new things (eg if you took her to a new playground when it was empty would she love it? How would that differ if some children where playing there?)

Woolfey Fri 11-Jul-14 14:52:50

Thanks Molly I'll look into that and see if we can self refer here.

zzzzz She only says a few words and it doesn't make any difference if we're home or not. Have been trying all different types of SALT advice for a long time and has made no difference.
Yes she's definitely behind, she has missed all milestones apart from physical ones. It's all new things, cups, places, people etc Even if she chooses a new thing herself like a cup sometimes when it comes to using it she rejects it.
Do you mind if I ask what you do? You're asking very specific questions so I'm assuming you have experience in this field smile

PolterGoose Fri 11-Jul-14 15:02:27

I think you have quite a few professionals involved or soon to be involved already. Make sure that everyone you see is actually doing something useful.

There's always a lot of talk about early intervention, but don't get too hung up on too much. Yes, it's all important, but don't forget to have fun. Find things she enjoys and do lots of them. Also, any good therapist will help you integrate therapy and learning into everyday activities.

zzzzz Fri 11-Jul-14 15:03:24

I have 5 children, two sort of relevant to your situation, but I couldn't decide which was more apt IYSWIM.

DS1 is 9 severely language disordered and probably autistic. We are still in the dx process. He is lovely and charming but language is still a huge hurdle and it impacts everything. The ASD ish bit was less overt when was younger but is more of an issue now.

Dd3 who is 7 got a virus and developed epilepsy at 11months, she took some whopping drugs to treat it which caused massive anxiety and was selectively mute for several years (now jolly and talking grin )

I'm sorry if I sounded nosy. I often ask questions while I think about people's situations as it sort of focuses the response, but it must come across as a bit pointed blush.

There is LOTS you can do to support her. I have to school run now, but there are tons of us with language delayed/disordered children on this board. It has been a huge help for me and we are all making headway.

Woolfey Fri 11-Jul-14 16:24:36

Oh no zzzzz please don't apologise. I really appreciate you taking the time to consider my situation. I was being nosey asking what you did smile

Polter it does feel a bit like we see someone, box is ticked, then we're referred onto someone else. They just seem to be assessing at the moment. I am hoping they will eventually run out of people to refer us on to and we will then actually get some useful help!

Thanks all for taking the time to respond thanks

PolterGoose Fri 11-Jul-14 16:36:03

box is ticked, then we're referred onto someone else
Yes, that's what I was thinking.

zzzzz is right, there's lots you can do, there's a wealth of experience on these boards.

zzzzz Fri 11-Jul-14 17:33:43

Ok start by thinking about creating a "language rich enviroment".
Think about visual timetables, lists, music, simplifying language.....

What words does she have (at two ds had numbers and colours with meaning and THATS IT). He had echolalia though so could say words but they were just sounds.

What helped (this is the truth but weird)
Holidays (knocked him out of routines, forced him to interact, shook him up)
Swimming lessons (he went to normal toddler ones, I have no idea why this helped but it really really did)
Vitamins (nothing fancy, but omega oil and abidec seem to help, mine has a limited diet though so that might be part of it, nb Nhs recommend vitamin supplements for ALL under 5s)
Music therapy (very happy making for the non verbal as they can just "be")
Private SALT (I learnt so much from dh's salt but it is expensive so unless it is empowering dump it)

Single piece of advice is to remember this is your child's childhood. One chance, one experience for them, make it as happy and good as you can. Nothing is worth losing a happy loved childhood for. (Oh and that be is language disorder, ASD or anything else, they will still grow and develop and improve in our case massively)

zzzzz Fri 11-Jul-14 17:35:02

Oh and DON'T WAIT for help. We are STILL being assessed at 9 and have never had any direct help (and not for want of asking).

Woolfey Fri 11-Jul-14 21:20:07

zzzzz thanks so much for the advice. I'm going to mull it all over and try and think what's best to try. Done so much reading it's all a bit of information overload at the moment.

At the moment preschool have asked me to try using picture cards with her as this is what they will be trying when she starts with them. Not going great so far but will persevere.

Also waiting for a book to arrive that SALT recommended to us so will see if that's any help too. More Than Words it's called.

Thankfully DD2 is a very happy child and I am focussing on that at the moment and trying to give her the happiest life I can. One of the reasons I posted is that I need to do everything I can for her now as the waiting times are so long for everything.

zzzzz Fri 11-Jul-14 21:47:21

There is tons to do. I found the best thing to do was focus on what would make his life easiest, and so help us to do more. Pictures didn't work too well for ds1 at your stage but sounds/music really did help. We had different songs/noises for everything. So going upstairs was ch-ch-ch, everything had a different "tune". "Going to granny's", "time to go", "going to the loo" he learnt to talk the tunes could be hummed as support to the language. So someone would say "would you like to come to the park" and I would say "yes, we'd live to" then hum under my breath. Sounds mad but the more understanding/control/ability to predict you can give the better mines behaviour is and the easier everything becomes.

Remember always that you can be perfectly intelligent and STILL not be able make sentences. Don't forget to feed her mind or she will be bored and become aggravating. One of the things we did was playa lot of sensory games. Things like matching games (8 identical balloons, 2 filled with rice, 2 flour, 2 beans, 2 water, stick them in a bag and match by feel) or (8 little jars with pairs if spices to smell). "Absorbent minds" sells great early years stuff (copy it!).

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