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Does diagnosis help?

6 replies

overwhlemedandexhausted · 01/12/2021 12:21

Hi,

I have a 3 and a half year old son who is suspected to have ASD. He had been identified by the council to have special educational needs and has now been seen by speech and language therapy services (after an 18 month wait!).

Speech and language have referred DS for an autism assessment but they have said the wait is really long and if we want to be seen quicker a privet assessment would be a good option (we asked of privet was a good idea as we are getting tired of the back and forth between multi agencies not really doing anything). However our local council have been very vocal on the topic and seem to be pushing to against getting a diagnosis. The council are trying to push DS into school in the upcoming year, which we are against for a number of reasons. Firstly he is non verbal and his communication and concentration are limited. He is not potty trained and nowhere near that stage. He doesn't follow direction and is very much on his own agenda. And he will be one of the youngest children.

Also with everything going on he has only been in nursery since September and only just been seen by speech and language. He does regress when his routine is interrupted and will take a few months to settle and feel comfortable enough to try and communicate. He is thriving in nursery (only in 3 mornings a week) now he has had time to adjust and we are seeing really good progress which I really don't want to interrupt at this stage.

What I wanted to ask is should we opt for a privet diagnosis? Will this help with differing his school place and allowing him to start in reception opposed to year one when he turns 5?

Thanks

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Vandelay · 01/12/2021 13:59

I personally would focus on getting an EHCP into place. An EHCP is (theoretically) completely needs-based, so a particular diagnosis shouldn't matter. I've noticed that the people who have struggled the most and have had to go to tribunal etc are those who didn't have an EHCP going into school (as they've often had to prove that the child was failing, or the SENCO has discouraged them from applying, etc.).. I'd start right now, either on your own if necessary or with help from nursery.

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Imitatingdory · 01/12/2021 14:08

Support in schools should be based on needs, not diagnosis. As should deferring a school place. As DS is summer born having a placement out of chronological year agreed should be easier, although there is potential problems on transition to secondary since getting the primary school to agree does not guarantee the secondary will. However a diagnosis can help if you want an autism specialist school or resource base, or for help from the specialist teaching service.

Does DS have an EHCP? If not you should apply. I agree with Vandelay, I would focus on this and ensuring it has all the provision required.

Is DS only attending nursery 3 mornings week your choice? Or is that all you have been offered support with? I ask because if you would like DS to attend more there is funding available, and many areas have specialist nurseries with assessment places i.e. you don’t need an EHCP.

Do you get DLA?

A diagnosis also gives you and others a greater understanding of DS.

In your situation I wouldn’t pay for a private assessment.

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overwhlemedandexhausted · 01/12/2021 14:57

DS is in the process of gaining a EHCP. The council want to review his support plan which is now due and a meeting is being arranged to discuss the EHCP to be put in place (which is being rushed as they want him to go to school this next year and don't want him to go without one). To be fair the council have been really good with getting him one to one support and funding for his special educational needs. It's just their determination to get him into school worries me as I feel that he would not do well there. He struggles to focus on tasks unless they are sensory like sand and water and will run around from one thing to another not engaging just running. And obviously the other things I mentioned before.

He has been offered 30 hours funding but we are transitioning him slowly as he struggles with the change of routine. He is due next term to do 2 and a half days.

We also have DLA for him got the middle rate first time (we were lucky!).

We have done a lot of research on autism and the health visitor, nursery and other professionals agree that DS most likely has ASD. I am just worried that without diagnosis the council will have more 'power' to place him in year one if we defer him. And of course W have no idea how long the NHS referral and assessment will take.

It would also help us as parents put things more firmly in place for him, look further into things that may help him and let other family members understand him better.

It's all definitely more stress than we need as parents trying to do the best for our SEN children!

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Imitatingdory · 01/12/2021 15:17

What week are you on with the EHCP? Are the LA sticking to the statutory deadlines and have they sought all the advice they should? DS has been assessed by SALT but did you request an OT assessment too?

Are you thinking about SS or MS? Especially in SS it won’t matter what year DS is in as the provision should be meet DS’s needs.

I am just worried that without diagnosis the council will have more 'power' to place him in year one if we defer him.

A diagnosis won’t make a difference.

would also help us as parents put things more firmly in place for him,

Like what? The vast majority of support is based on needs, not diagnosis.

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overwhlemedandexhausted · 01/12/2021 16:18

We have not yet gained the EHCP but in the process. We have to have a 'my support plan' (which we do) drafted by the council, parents and nursery and it needs to be reviewed twice before the EHCP is granted. We were meant to have the first review last week but due to unforeseen circumstances this had to be cancelled and we are waiting for another date ( should be soon as our nursery likes to keep everything to schedule).

We haven't scheduled an OT assessment and haven't been advised too by anyone 🤷🏻‍♀️. Tbh we haven't had any real help with who to see or where to go except SALT who have referred him for an autism assessment.

We are thinking MS as his nursery is the the grounds of the local MS and was thinking it may be easier for transition and that's where the council seem to be wanting to place him. They do seem well equipped for him for the bits we have seen.

It's good to know that we don't have to have a diagnosis than you for answering my question!

Support was meaning more myself going back to work if that would be something I need to rethink for the forceable future in order to better support DS, If we need to look at supporting him differently with his diet (it's very restricted) and how to help him with that long term and if there are any strategies that we can help him with that are specifically connected to ASD. tbh we haven't had any support except bits of advice with his speach from the council so we are having to research everything ourselves.

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Imitatingdory · 01/12/2021 16:26

We have not yet gained the EHCP but in the process. We have to have a 'my support plan' (which we do) drafted by the council, parents and nursery and it needs to be reviewed twice before the EHCP is granted. We were meant to have the first review last week but due to unforeseen circumstances this had to be cancelled and we are waiting for another date ( should be soon as our nursery likes to keep everything to schedule).

This isn’t correct. The only legal threshold for an EHCNA is a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Any other test is unlawful. LAs often try to fob parents off with non statutory plans like my support plans, but they do not provide the assessments, support or legal protection EHCPs do. Read up about EHCPs yourself - IPSEA and SOSSEN are good for this. And apply for an EHCP yourself, IPSEA have a model letter you can use.

When you apply for an EHCP there are certain advice that must be sought, but you can also request any other reasonable ones such as OT. In your case OT would be both reasonable and wise. Don’t rely on others to inform you, especially not the LA.

In EHCPs provision such as OT and SALT can be included, often much more than is otherwise usually available.

DS’s needs aren’t going to change by a diagnosis so don’t let a potential diagnosis influence whether you go back to work or not, make the decision based on needs. OT may be able to help with restricted diet, is it related to sensory needs? Or it may be ARFID which can be co-morbid with ASD.

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