Suspect ASD- Private costs.

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My DS2 has a heart condition(requires open heart sugery).

He is two in 2 weeks.

He is non verbal(currently going speech therapy which is a showdown as he screams and refuses to interact with her as he does not like anyone else apart from DS1 and grandparents)

He bashes his ears when there is noise, will pull hair in frustration, refuses to eat any food unless he touches and smells it. I could use one hand to say what he eats/refuses. It's a daily battle to feed him, regardless of his heart.

He avoids eye contact, doesn't even look at me! Won't respond to his name or anything i.e no, lets get shoes on, bot bot(bottle), will make noises/grunts to say what he requires(guessing game sometimes). He plays with toys for 3-9 months old. Refuses any interaction with children. Will always play alone even with DS1 encouring play(8 year age gap)

Anything new in the routine(which I avoid at all costs) all hell breaks loose literally. He will bite me, headbutt, even spilt my mums lip due to the outbursts.

I'm waiting for portage. There is a 14 month wait for the appointment for ASD etc.

I've applied for DLA for him recently and he has a car funded through family fund as hes so unsteady on his feet, appointments etc.

How much does it cost to go private? As its extremely hard as I feel he's not getting the right support nor am I for him. I know they don't like to diagnose until 2.5-3 onwards. Please if anyone has any advice.

Hv is no help, claims he will speak over time, the behaviour will stop but this is clearly not normal from a child of his age.

A private assessment can cost anything between £1750ish to upwards of £3k.

As its extremely hard as I feel he's not getting the right support nor am I for him.

However, a private assessment and potential diagnosis may not result in the additional support you hope it will. Support is based on needs rather than diagnosis. Has DS been assessed by OT? Has anyone mentioned applying for an EHCNA? Have you had social care assessments? Has anyone mentioned Scope’s mentoring programme? Have you looked at ARFID?

What support do you think DS/you are missing? I know that sounds off, but it’s a genuine question, if you say what support you feel you need someone may be able to point you in the right direction.

Everything has been focused on heart(rightly so) but all else has been left behind. I started mentioning it to HV around 3 months that he was very different to DS1.

The lack of eating is due to his heart but the lack of food he eats i.e texture/smell is certainly not. He has had his ears tested, which come back fine. The ear test took me nearly 8 months to get after the HV finally done it.

I did not know I could apply for EHCNA as hes only nearly 2. He has a SS as hes a child in need, not had OP.

Told by HV, SS that he will grow out of it and most babies are like him. Which I strongly disagree and feel brushed off.

Yes that sounds very unsatisfactory from HV, but I agree with the PP that he should get support based on his needs even without Dx, so money may be better spent elsewhere. E.g. if he has a lot of sensory issues OT support might be more helpful: can you get on a waiting list for OT or consider a private assessment if it's too long?

If you Google your Local Authority name plus "Local Offer" there should be lots of information on offers in SLT, OT, Physio, etc. Areas differ hugely in both what they offer and how much information they put on the Local Offer website - but we certainly found things there that we had never been told about.

It's also worth checking whether you can find any local SEN parent groups either there, on Facebook or through the NAS (which has local branches but not in all areas). We found often other parents were the best source of information on what services/supports were available.

You can apply for an EHCNA yourself. Have you thought about nursery? Some specialist placements start at 2, and in some LAs you don’t need an EHCP to start there as they have assessment places.

I presume the social worker is from the children with disabilities team? Are they providing any support? Have you had a carer’s assessment?

In some areas you can self refer to OT, in others you need a referral. Some areas don’t commission sensory OT on the NHS, but it is worth a referral anyway, and sensory OT can be part of the EHCNA.

Do look in to ARFID. You could ask for a referral to a specialist clinic, but it might be worth waiting until after DS’s operation for this.

The private assessment for my DS cost £2000. x

Thank you for all the information, I've not been told half of this!

There is a lot of information for my local authority after I typed that.

Social worker is not, can you request this? She has just changed to his SW as the previous one left. She comes every 3 weeks to check on DS2 that's all, I would give her the benefit of the doubt. I have emailed her twice with no response.

Not had a carer's assessment.

Old SW suggested he goes to a specialist nursery with children with the same needs, have a 1v1 worker. I have mentioned it to the new SW but sort of dismissed it and she said a normal one would be okay if 1v1. I disagree as DS2 will be overwhelmed by noise, children etc. Even at the park he refuses all contact with children, even if they approach him he bashes his ears and does hand gestures(flapping hands, which means go away).

You can ask social care for a carer’s assessment. I would expect DS to be under the CwD team, so as he isn’t you should ask to be.

From your posts I think a specialist nursery is likely to be necessary. If the social worker won’t help facilitate applying for an EHCNA can bypass her.
 Some special schools have playgroups or coffee morning type thing, it’s worth seeing if there’s anything like that locally.

If DS will tolerate them have you tried ear defenders or noise cancelling headphones?

Definitely agree with recommendations above. I don't know your financial situation, but if you do have any money to spend on this at all I'd spend it on private support (better SLT, OT, ABA or other depending on what you want help with). A diagnosis won't get you all that much meaningful support anyway so it can't hurt to wait your turn on the NHS waiting list and get ASD-appropriate support while you wait. Your DS is young, and you can have a big impact on future outcomes by acting early.

Online parent groups (and mumsnet) is a great place to search what's out there, nationally and locally.

Choice here is 4 year waiting list or £2.5k for private assessment 😭