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After ASD diagnosis-what happens next?

(10 Posts)
Buscake Wed 21-Jan-15 07:29:53

My almost 4 year old has had her preliminary diagnosis of ASD confirmed by the autism panel. We only know this from chasing up her case coordinator who said she had sent a letter about this to the paediatrician - we have received nothing and neither has the GP. So she has been diagnosed with this and nothing has happened! No treatment, management or support at all. My husband is a clinical psychologist so we can try some strategies but we need help.

She has really struggled at preschool (there 2.5 days a week) since she returned after Christmas to the point where they have to put her in the office sometimes several times a day to stop her meltdowns. She has started flapping, biting, hitting, getting up at night distressed, unable to walk home safely along with all her other symptoms. It just feels like she has suddenly got so much worse and there are no avenues of help to pursue. I am expecting my 3rd baby this week and we are in the latter stages of a greatly delayed extension build to our house, so of course there is a lot of change going on which is hard for her; however I don't know where to look for help. Preschool have started the ehc plan integrated assessment, but she needs help from an ot or physio for her coordination problems, we need strategies for her behaviour etc.

I know there is little help out there, but I cannot believe that a child diagnosed with a neurological/neurodevelopmental condition can be offered literally zero support or help. It's a disgrace. Can anyone point me in the direction of where I should be going to look for help? Your advice would be much appreciated.

Ineedmorepatience Wed 21-Jan-15 08:17:10

Not surprising sadly!

Arm yourself with knowledge, read and read. Come on here for the best advice anywhere.

You are seriously lucky to have a clinical psych in the house!! If your Dd is verbal, I would seriously recommend teaching your Dd the vocabularly she needs to express fear and worries. Children with Asd do not learn to express themselves in the same way as other children and need it to be taught before they go to school preferably!!

Find a support group if you are the type of person who would get benefit from sharing experiences with others in a face to face way.

Good luck flowers

zzzzz Wed 21-Jan-15 09:16:45

Ask go for referral to OT.

The bottom line is you are best to assume you are on your own and treat any (none here so far and mine is 9) support as a bonus. The best resource I have found is this board for solving individual issues and pointing me in the direction of things to read.

Start reading NOW.

Tambaboy Wed 21-Jan-15 09:58:24

Ask the paediatrician for a referral to the OT.
Consider applying for DLA. Cerebra has a very good guide.
NAS run courses for parents, Early Birds I think they are called. I think the paed can refer you.
Our local NAS branch (with CAMHS ) recently run a series of seminars on Autism which I found useful to certain extent.
But for me the main thing is , as the previous posters said, read up and inform yourself as much as you can. These boards are an excellent source of information and support.

Tambaboy Wed 21-Jan-15 09:59:53

And welcome to the board buscake!

Taramara Wed 21-Jan-15 10:02:01

It was like this for us at this age
(2 years on and things have got a lot better - just to give you some hope)

The key for us was finding a nice school with a nice SENCO - so my advice would be to start thinking about schools now, start looking round, meeting SENCOs & heads & being upfront

Before school we were on our own. Had some help from Portage. You can self refer

Apply for DLA. We hesitated. Eventually did. The money would have paid for private OT or physio in the early years. Do ask for NHS referrals for both but be prepared for long wait and minimal provision.

There's a great guide on sensory things is the remit of OTs : sensory profile toolkit - only a few £, now sold out on amazon but looks available direct from authors. You can then work out what her sensory triggers are and then try to increase/decrease the sensory inputs in these areas

Have nursery applied for funding for 1:1 for her - this is usually available for the council.

Taramara Wed 21-Jan-15 10:07:58

If I had my time again I would have apply for DLA and got private OT in.
If you post where you live vaguely someone might be able to recommend one.
If you ring the DLA application form now then it gets backdated to today & you have 4 weeks to apply.
It's only to pay for what should be being provided anyway - wish I had realised this/ thought of it in that way and just done it.

StarlightMcKenzee Wed 21-Jan-15 16:00:24

These two books are both excellent at helping with communication and behaviour.

Read them both and sadly you'll be way ahead of the majority of school staff, so finding a school who has staff who will borrow them and learn or trust your knowledge is essential.

senvet Wed 21-Jan-15 17:12:31

buscake contact the NAS helpline 0808 800 4102 and ask for an education volunteer, who can guide you through requests for portage (SEN help at nursery) and other avenues.

It sounds like there are sensory overload issues going on there which a good sensory OT will help to analyse and sort out strategies for managing.

By chance, I was speaking to an autism special school today about two sorts of things they do for their students:
1) a calm room where kids can wait for a meltdown to settle
2) a sensory room where senses that need extra stimulation can get that extra stimulation.

There is no reason why some of this can't be replicated at nursery (and maybe even at home subject to builders etc).

But I have found out that there are a lot more senses than 5, and any of them could be under-responsive or over-responsive.

I found it a strange time when I got diagnoses - me or the kids. Part is relief that there is an explanation and some hope for a road map going forward, and part is a sadness that there is an issue at all.

But I have been a wheelchair user for years, and wouldn't change it even if a miracle cure turned up tomorrow. My son with dyslexia says the same. A lady with autism that I heard at a conference was asked, if she could change it today would she? "No way! How could I write a book in a day? How could I gaze at something beautiful without anything in my brain trying to tell me the time?"

There are advantages to ASD which mere mainstream folk like us can barely guess at, let alone understand. In the meantime your DC will have to put up with mainstream folk making her life difficult, just because she is insufficiently like them - there would be no problem if most people were like her.

Hope this helps

PolterGoose Wed 21-Jan-15 18:27:11

Message withdrawn at poster's request.

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