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Ds autism diagnosis. What questions should I be asking?

5 replies

WeCameToDanceWithTheDead · 29/11/2019 12:00

I'm sorry that this is probably in the wrong place. The special needs board can be quite quiet so I thought I would try here.
In a nutshell, my ds was diagnosed with autism yesterday. He is 4 and also has a diagnosis of global developmental delay.
Me and dh were not expecting to get the diagnosis yesterday and were quite shocked (silly really as we new it was coming) so didn't really know what questions to ask.
I was wondering if anybody who has had a similar diagnosis for their child know of the questions that I should be asking at the follow up appointment. I keep thinking of things I would like to know but as soon as I've thought it I forget it. I will start writing them down but for now has anybody got any ideas of where I should start?

OP posts:
helloisitmeyourelookingfor · 29/11/2019 12:03

Doesn't matter if you were expecting it or not, diagnosis still hits you so not surprising you were a bit stumped by it

Is your little one currently receiving speech or ot support? If not I'd start with them

Let school/nursery know and ask them about an EHCP if you don't already have one

The special needs jungle is a really helpful website to look at for starting points but don't forget to give yourself time to process everything

Stuffofawesome · 29/11/2019 12:08

A diagnosis can be a shock but it is a gateway to support throughout school so really necessary.
Www.autism.org.uk good place to start

What interventions can they provide to support your child? Occupational therapy involving sensory processing issues really helpful.
Are there any further assessments that could be helpful eg educational psychologist, auditory processing, speech and language etc.
What helped me was finding out more precisely what my child had difficulties with and what could be done about those issues to make his life easier

WeCameToDanceWithTheDead · 29/11/2019 12:45

Thank you both.
He had been seeing a speech and language therapist for a while but he was having a break from it for a bit. We met his new one yesterday and he will be seeing her soon.
We are starting a course in January where we will be meeting an occupational therapist as part of it so I'm hoping that will be helpful. The doctor said that ds is quite sensory driven and that they will be the best person to advise on that.
I'm particularly worried about the school. They have not been the most understanding and I'm worried that it's going to get worse. I will definately be asking about an ehcp and bracing myself for them being resistant.

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Borgen · 29/11/2019 13:48

It is a shocking diagnosis, even if you expect it, and I'm not surprised it has taken a while to sink in.

In theory, the school shouldn't be resistant to apply for an EHCP unless they don't think they (yet) have enough evidence for the Local Authority (LA) to agree to one.

Schools generally like it when LAs grant an EHCP as it means they get more formal support/intervention from outside teams and that the school also receives funding specifically for the support the child needs.

The difficulty getting an EHCP tends to come from not being able to put together enough strong evidence and paperwork not only of the child's needs (diagnosis) but of the impact that has in school and also a record of what has already been done from within the school's existing budget.

Some schools may already know that their particular authority wont approve the request until e.g the child is older or there have been more professionals involved. And schools sometimes don't like applying if they think it will be turned down as it wastes time and also (they worry that...) it makes future applications less likely to be successful if they have a reputation for applying too much. Technically that last point shouldn't be true but I know many schools who feel it is.

Also, some LAs have some other procedures in place first. E.g. for under 5s some ask schools to apply for an Early Years fund to support the child for a few years until the extent of their needs and the impact on their education is clearer.

Other times the school might feel that the child's need isn't great enough for an EHCP...do you know if they have concerns about him or do they think he's alright in school?

Basically, if the school does appear resistant, it's worth trying to find out what they think the stumbling block is..... it might be something that you can help them overcome or it might be that they're right to need a few more terms of school-funded intervention and support.

Thanks
Stuffofawesome · 30/11/2019 12:58

Understanding Your Child's Sensory Signals: A Practical Daily Use Handbook for Parents and Teachers https://www.amazon.co.uk/dp/1466263539/ref=cmswwrcppapiii_uBM4Db2G23GZB. Might be useful for school to help them understand.
If you can get them on board then the days will be so much easier for ds and the teachers too. Very simple things like a wobble cushion of weighted lap mat can make all the difference you Ot will be able to advise

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