4yo private ASD dx

(8 Posts)
londonsquirrel Mon 05-Nov-18 22:32:35

Hi all!
My DS has just turned 4 and he has started school nursery this September. I have been suspecting ASD since he was little, was fobbed off by a consultant paed at around 2yo, my concerns have been dismissed by multiple HVs several times over the 4 years. Now I raised my concerns again and SALT has reffered DS to a paed + put him in list for observations at nursery. Observations are not until spring term and I have no idea when we get an appointment with a paed.

Nursery made me see how different he is from other kids and I have only realised now that there has always been a reason behind my struggling for the 4 years. I have myself accepted DS is on the spectrum, probably HFA. So I am all over the place reading about ways to support him - it is mostly social skills that DS is lacking. My current worries are about school.
Does it make sense to go for a private diagnosis and try to get him EHCP before next September arrives? I have no idea how long the process takes, but most certainly I won’t have EHCP before school applications close. Or is it better to wait for the NHS and spend all the pennies on SALT And other therapies?

OP’s posts: |
Viewoffriday Mon 05-Nov-18 22:45:49

I would say that there's no benefit to a private diagnosis in your case.

If you're planning to stay at his current school, they are aware already, and if they're good, it's very likely they won't change their approach with or without a diagnosis.

You need your child to be facing (significant usually) difficulties at school to get an EHCP, so a diagnosis won't make any difference there, esp if it's in the pipeline. You won't be able to get one just because you have a diagnosis, and in my borough, they won't accept private reports...

In my case, the NHS diagnosis process was really useful. While waiting we had access to some useful services we wouldn't have found or been able to access otherwise. And likewise, afterwards it got us in to the Cygnet course. So, while support is in general woeful, I would stay in the NHS process to get at least something.

And as you say, you may well want to spend that money on Salt or OT.

Thekidsarefightingagain Tue 06-Nov-18 06:18:02

If there are no other significant issues then I would personally wait it out on the NHS for a bit (not years though) and spend your money on private speech therapy, OT. You need an idea as to whether he has any speech & language, motor issues etc and what these issues are. We did have to go private for a diagnosis as got no support from the NHS whatsoever despite ds having very significant issues so it was a waste of time and I still feel bitter about it. Hopefully your region is better.

Sirzy Tue 06-Nov-18 06:22:10

If he does need an EHCP then that wouldn’t be diagnosis related anyway.

malmontar Tue 06-Nov-18 07:27:57

Most autistic children with ehcps are struggling at school or need quiet a bit of access to SALT or OT. I think at his age you would already know if that was the case but please don’t let that discourage you from trying. The needs assessment is done by the pead team, salt and ot if that’s what the parents request so it may be a quicker way to an assessment if they accept it. The problem is, most requests for needs assessment get refused and you need to go to tribunal. It’s a bit ironic that you ask for a needs assessment so they can assess you child but they refuse to because you haven’t got enough already done.
Bear in mind most private salt and op therapists will require you to pay for an assessment done by them before you start therapy with them so they can see what your ds needs to work on. The only exception I’ve seen of this is if you have a very recent report.
What sort of concerns do you have? Depending on the severity of them I would probably just wait and let him enjoy nursery. Do keep calling the pead team to check for cancellations, it isn’t unheard of for people to get seen quicker thanks to this. Unfortunately all does depend on borough.

londonsquirrel Mon 12-Nov-18 21:34:11

Thank you so much for the replies! I will definitely get him into private speech therapy, NHS SALTs have always fobbed us off saying DS has difficulties because he is bilingual, because he is a boy, whatever else.

The nursery does not have any concerns for now, again, giving him allowance for being a bilingual boy. But he was born in the UK and has been going to a childminder 2 mornings a week since he was 1.5, 5 mornings a week from the age of 3. Since he has started school nursery his English is progressing. He can answer questions, but usually he has no motivation to talk or to listen to English speech, which prevents him from learning I believe -- that is my main concern.

DS behaves well at the nursery. Joins activities with other children, explores, etc. Though, he is more interested in objects and doing things on his own. When he is at home he will flap hands, spin objects, do repetitive play. As if he is holding himself while at nursery and lets all these behaviours go when at home. Plus, major tantrums and protests agains every little thing, which I believe should be more or less over by the age of 4.

OP’s posts: |
minimalist99 Tue 13-Nov-18 13:26:35

Hello,

I understand how you feel and I just wanted to share my experience with you. I have a DS who is my eldest and has always been a little different, as a baby he would never sleep , wanted to be rocked all the time and he hated his pram. Whilst weaning he had issues with certain textures, this is an ongoing issue and he also had limited eye contact you could see prolonged eye contact was an issue for him and it still is. He just doesn't find it comfortable, like your son my son is very well behaved at nursery but when I go to pick him up some days he gets really aggressive with me and he is so so angry when we get home. He also used to cover his ears up when he was overwhelmed and he now licks the palms of his hands when he is anxious.

I was and still am struggling to cope with his tantrums and meltdowns but aside from that he is so so lovely. I decided to have him seen by a private OT who also had experience with dealing with children on the spectrum. Even though deep down I knew he was on the spectrum I went into the appointment expecting her to say that he had a sensory issue but she actually encouraged me to investigate the possibility that he was on the spectrum. She did warn me and say that usually children that are high functioning/aspergers are overlooked because they "appear" to be coping well but they're not.

So i had him seen by a private community peadatrician who diagnosed him last weekend.

Though the nursery teachers including the senco think that he is just a little quirky I feel like this diagnosis will help me understand him a little better and the doctor said he will be letting our GP know so that they can get the local authorities know. In the event he does struggle in school, I will be aware of how to help him and I will have an understanding of how things work.

I hope you find the answers you are looking for and good luck. Follow your instinct you know your child best and don't let health visitors/salt fobb you off. Our SALT dismissed any concerns we had with the usual "male behaviour" and whatever nonsense sprung to mind.

Cla835 Wed 14-Nov-18 14:24:11

Hi
I was in a similar position before I had an official diagnosis. It is hard for us as a family and my daughter her self.
We considered going private but after feedback decided that we wouldnt really be that much further forward.
I used a multi sensory training centre as they supported us as a family and my daughter. They had fresh new ideas and ways of dealing with certain situations which we found helpful whilst we were waiting for appointments and the system to process results etc.There may be a local one to you or you can use one like we did not in our area as they cover nation wide usually. Hope it helps.

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