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Help - autism question - does early diagnosis matter?

(19 Posts)
Thisistheway Sun 07-Jul-13 12:00:35

Really hoping someone can help. My DD is 2 years old and has so many autistic traits I can't imagine that she isn't actually autistic. Her paediatrician however doesn't think so and doesn't want to see us for another 6 months.

She is already due to have speech therapy as she doesn't say many words. Should I push more for a diagnosis now? Would it make a difference? What other therapies should she then be getting?

Thanks for any help and advice. And 2 more questions if anyone can help with these too:

1) I also feel a bit clueless when it comes to what this may mean for her and our family. Can someone recommend say a book or something I could read to find out more?

2) She has just started retching and sometimes actually being sick when she touches certain textures, especially anything sticky like the back of a sticker. Is there anything I can do to help her with this?

SuperiorCat Sun 07-Jul-13 12:15:30

An early diagnosis helps get the help your DC need...but... unless her needs are very severe then it is difficult to obtain a diagnosis as lots of traits at this age could be a developmental stage.

FWIW DD was assessed at a similar age as she had a whole raft of traits and her brother is autistic so the genetic component was there.

6 years on and whilst she has quirks she has no major issues and whilst on the milder end of the spectrum IMO would not get a diagnosis.

As regards (1) I would hold off - some family members can be hard hit by a diagnosis and there is no need to cause yourself additional stress right now if she is not ASD.

(2) Tricky one - easier managed at home than a pre-school environment - in an older child I would suggest tweezers (assuming she wants to have stickers) but I guess she is probably a bit little to manipulate.

Thisistheway Sun 07-Jul-13 12:31:56

Thanks superior. Re the sticky thing it's not so much the stickers as she's not fussed about them, but that anything sticky makes her retch (e.g. sticky bits on the carpet etc). I was thinking maybe I should expose her to that kind of texture more til she gets used to it (or whether that would be cruel). The touch of some food makes her retch too and she's choked a couple of times which has been quite scary.

If I listed the traits she has would you know whether she is ASD? Or is it more complex than that?!

jocook Sun 07-Jul-13 12:32:40

My dd is now 4 and was diagnosed in jan this year (just before her 4th birthday). We started recognising the (after nursery pointed out problems) at 18months and as soon as I did a bit of internet research I thought 'shes autistic' doubt in my mind (though we have been through times when weve blinkered ourselves and hoped shed 'catch up'!!!) Our GP was very 'mmmmm Im no specialist but doesn't look like autism to me' (she always gave good eye contact and is very loving and cuddly which masked a lot of the other signs) but we had a brilliant Early Inclusion Officer with our council who nursery got in to do observations on her and at around 2.5/3 gave a referral to the Multi Disciplinary Team (im sure all councils have different names for these professional's but Im sure they all have them!) We then got appointments with an Educational Psychologist (who I love.....she is amazing and help me personally cope with all of this aswell as helping dd) and the Ed Psych was the one who explained to me how difficult it sometimes is to spot autism in girls as they are few and far between, most of the books and research is written about boys and that girls present differently in lots of the stereotypical areas.
Does your dd attend a private nursery? It may be worth asking if they have someone who can do an assessment on her and signpost you to further help??
Oh and mine was at speech therapy who promptly dropped her when autism was diagnosed as ST doesn't really help since the speech delay is due to the autism.

Thisistheway Sun 07-Jul-13 13:26:53

It sounds like there isn't a rush then. She doesn't go to nursery as I'm a SAHM. She's also not walking so it's not really suitable for her at the mo.

That's a shame about the speech therapy, I hadn't realised they couldn't help with delays due to autism.

dev9aug Sun 07-Jul-13 13:38:23

Have I just walked in a parellel universe. with all due respect, we have the opposite experience. The early diagnosis was a blessing. Ds was dx at 2.4 , I wish it had been sooner because we have put therapies in place to help him. Without them, he would be a lot further behind than he is.

We are using the same therapies for ds2 who is 20months old. He might have autism or he might not, but by treating him like he has, he is actually much further ahead than he could be at this stage. OP please even if you don't like the idea of a diagnosis, read up on strategies used for ASD. Even if your dd does not have ASD, they are only likely to help her in the long term.

Oh a bog standard SALT will not be able to help, I could murder the first salt who we saw as she stopped me from going private. There are SALT specialising in ASD who could make the world of difference with the right approach.

dev9aug Sun 07-Jul-13 13:40:27

Read up on it all and do everything you can. If she didnt hve ASD, then no harm done. compare it to the stress you will have later on if you knew you could have done something and didn't.

Thisistheway Sun 07-Jul-13 13:44:39

Thanks dev. Did you just google everything on it or was there a book/s you read that you can recommend?

ArthurPewty Sun 07-Jul-13 15:09:56

Message withdrawn at poster's request.

babiki Sun 07-Jul-13 15:21:13

Yes, just treat her as if she has ASD, no harm done if she doesn't.

You can look into Applied Behaviour Analysis, there is plenty of info on this board - NHS does not provide it. Actually prepare yourself to go private for most stuff.

DIR/ Floortime another approach you can search.

Regarding the stickers: look up sensory integration, good Occupational therapist trained in sensory integration would be great.

Don't expect much from SALT - mostly it's basic assesments and generic leaflets/activities.

Books: Child with special needs from Greenspan is good, for ABA - look up books from Schramm, for speech and language More than words by Hanen.

You can also do online M- chat autism test for toddlers, just to check if any red flags will come up.

boobybum Sun 07-Jul-13 15:38:20

We had a similar experience to Dev in that the NHS salt we saw talked us out of going private. How I wish we hadn't wasted all the time we did by listening to her.

I would definitely recommend you look into ABA.

Also are you aware that you can apply for help such as DLA and carers allowance even before you have a formal diagnosis? If you are considering early intervention then the money could really help.

ouryve Sun 07-Jul-13 15:58:16

ASD or not, OT might be able to help with the sensory issues. There's quite a few good books on sensory integration (or processing) disorder which will give you a few pointers for yourself.

DS1 has ASD and while he was being assessed, it became increasingly clear that his baby brother wasn't developing typically - no speech, motor delays, no purposeful play and lots of sensory issues, which meant that his diet was quite limited and we had to feed him some of what he would eat because he couldn't use cutlery and wouldn't touch it with his hands. He was referred at 21 months and subsequently diagnosed with ASD. While he was undergoing diagnosis, portage helped me to work out what sort of toys would grab his attention and encourage him to interact, rather than just throw them about, SALT assessed him and OT told me what I'd already worked out and piddled about trying to get him to pick up cooked spaghetti. He secured funding for an early nursery place and clicked immediately with his key worker, who is still his 1:1, almost 5 years on. And yes, he is still non-verbal and very much autistic and still struggles with textures, but eats a much wider variety of foods than he did as a toddler.

marchduck Sun 07-Jul-13 19:06:25

It's great that your DD is under paed already - good to be in the system early on. You sound very informed and that can only help your DD, whatever the outcome -and like everyone has said, the ASD approaches wont harm your DD, even if it is ruled out.
My DD first came under the radar at her two year health assessment, and was referred to community SALT. As far as I was aware at the time, it was just her language that was delayed, but SALT referred her to multi-disciplinary team. At the first meeting, when DD was 2.6, paed said that whilst ASD wasn't leaping out at her, she couldn't rule it out. DD had SALT review, OT appointments & Development Intervention in between reviews. She was then got dx of ASD and speech & language disorder just before her fourth birthday. Family found it hard to accept at first; but they are coming around now.
I do not regret having the dx. I would have loved to think that DD would have caught up with her peers, as everyone told me she would; but the fact is she didn't. The most important aspect of her dx is that it will help her with having support for starting school. Touchwood, we are pretty close to the finalisation of statement. The process has been done on the basis of her difficulties arising from ASD, and that is due to the very wise advice I got on MNSN.
All the best to your DD & you.

dev9aug Sun 07-Jul-13 23:00:06

I didn't use google as it was all too scary at the time. Most of the advice I got was from here in the early days. babiki has given some really good recommendations for books and I second Applied Behavioural Analysis (ABA). It is the most effective technique to teach children with ASD, but it also works beautifully for children with delayed development.
I would start with Hanen's "more than words" and build from there. Come back here and start a thread if you have specific questions, most people on here would be happy to answer with their experiences.

salondon Mon 08-Jul-13 11:23:43

Ditto others. I would assume its ASD and handle it like that

Tiggles Mon 08-Jul-13 13:25:37

I knew DS2 had autism by the time he was 12months (DS1 has Aspergers and was in the dx system when DS2 was born). Having read up loads on autism I just started with early interventions with DS2 at home. It made a massive difference to him. Just before his 3rd birthday he was hardly verbal, and threw a tantrum if I tried to join him in anything. He is now 6 and whilst he is still clearly autistic (failed the ADOS with flying colours at 5) he has a lot of coping strategies in place, so that on first observation by the autism team they weren't sure if he was autistic and coping, or ok. He was on the waiting list for assessment for a couple of years. If he had been assessed at 2 or 3 I'm sure he would have been LFA, but he has an HFA dx.
So like others have said, if you suspect ASD, just put intervention in place yourself (I got all my info from the internet, especially forums where people were really helpful) and get on the waiting list for dx. It won't hurt an NT child, but will hopefully make a difference to a child with ASD.

Not arguing with any of the advice above. I can second the recommendation of More than Words. My DS's SALT, who was a Hanen trainer, and PECS trained (ie very good with ASD) recommended it and I found it a very useful start.

The advice that treating them as if they have ASD, ie giving all the interventions you can as early as possible, is excellent. It won't harm a DC who's not ASD.

2boysnamedR Mon 08-Jul-13 17:27:39

If your child isn't at nursary yet can you contact your local sure start centre and get their inclusion officer out to see you? I have mine coming out tomorrow to advise me on my baby as my five year old has delays

Thisistheway Mon 08-Jul-13 17:59:26

Thanks so much everyone, I will definitely start working on activities and things to help her. And I will try and get a visit from a sure start centre officer.

Re the OT - is that occupational therapy? I'm prepared to go privately but wonder if I should wait for a diagnosis first (could take a while though?).

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