What kind of help is there for child with autism?

[Tibtilkobkob]

Have a 3 year old with a speech delay and probably something else going on. Possibly autism or inattentive adhd I'm not sure. Autism symptoms seem such a catch-all that I really don't know.

Anyway my question is: what support is out there? If I pushed for it would I be saddling them with a label for no real benefit at the end of the day? I know that kids who are a bit more severely affected get support but what about those like my child? I worry about pushing for a diagnosis which will bring them no help.

For context:
They are speech delayed but progressing. We have arranged a private speech therapist as NHS referral process v long but also on the waiting list for NHS. We are also tackling it at home with an online programme that has weekly phone check-ins with a speech therapist.

They are very socially anxious - don't really talk at nursery much though talks at home. Parallel plays but doesn't properly play with other kids yet. We're also trying to address this through exposure. Some of it has possibly been exacerbated by covid.

In essence: they are on the milder end. We are not taking their problems lightly and are trying to do all we can at home.
For those with children who have been diagnosed with sen but who are milder cases - has the diagnosis been helpful? Nursery clearly think there is something wrong but have been a mix of ambivalent and unsupportive. He's meant to have a plan in place to support his progression but I don't think they're really doing it which might have contributed to my worries about this whole thing.

Is there help out there? Please tell me.

My ds was diagnosed at 12 with ADHD and ASD. He knew he had ADHD in his first week of secondary school. In nursery and primary there was no obvious delay or obvious social issues. It occurred to me that he might well have ASD a few times but DH very resistant to the idea of saying anything was 'wrong' with him. Both of us probably on spectrum anyway. DH would ask 'why pathologize him'. I wish I'd pushed for diagnosis much earlier, not because there's any particular help that's out there, but just knowing would have changed our parenting. I'd have spent less time encouraging him to do 'normal things', encouraging him to enjoy parties etc. He is happy to have the diagnosis to understand there's a reason why he feels different.

Also bear in mind that while ASD may seem 'mild' now - in teenage years differences often amplified.

Also have a late diagnosed child and wish it had been assessed earlier.

Autism is a dimensional condition - so even after a diagnosis there is a lot of work to do to understand your individual child's needs and get them met. That is work parents usually have to lead (understanding your child's autism and advocating for them with professionals). An assessment would give you a starting point to work from. Spending years in Primary being misunderstood as a learner, in sensory discomfort and with mounting difficulties in social relationships is not great, but when the lid comes off at Secondary, that crisis is a difficult point to try and build support up from scratch; there are big impacts at that age in terms of social identity etc, and you'll face a long queue for assessment/services.

Autism isn’t a catch all. You either have an autistic brain or you don’t - like being left handed or right handed. If you think your child may be autistic (or would like the professionals help in determining this - although they don’t always get it right and you hear stories of children having to be assessed numerous times before getting a diagnosis), I would definitely go for the diagnosis. One, because your child is only 3 and you may well find they do need some sort of additional support at school at some point in time - getting a diagnosis is a long long process and from my experience it is better to have it in your back pocket to point to when support is needed. Two, if your child is autistic, it is who they are (and should be celebrated) and it may be a real comfort/critical to them in terms of self identity and their understanding of why they find certain things more challenging or instinctively approach some things differently to others. It isn’t a dirty secret to be swept under the carpet. There are so many stories of people who weren’t diagnosed (or more worryingly were and their parents kept the diagnosis a secret) and have been traumatised by not understanding through their youth why they felt different or struggled with certain things.

I have found the Facebook group Autism Inclusivity incredibly useful. It is run by autistic adults to give advice re autism and parenting autistic children. It is worth bearing in mind that it is NOT a parent support group and I’d strongly recommend being a silent passenger on there for a number of months, absorbing the invaluable insight and information, before posting.

It would be helpful to have the diagnosis as they can take years if your on the nhs.

An EHCP can be useful.

Dla can help so you can spend the cash on your child ....

Although probably going to be shot at this - but I've found no help! It's your friends that's the support (even join random sen groups on facebook) they understand things better.

When they are little generally the mums notice the difference- the older they get the gap widens - more demands from school with work - it's more noticeable that they need to adjustments to cope

Diagnosis is important to help DC understand themselves.

However, support in nursery/school is based on need, not diagnosis, so the nursery should be providing support already. Push them to review the IEP and then follow it. If they need more funding they can apply for early years inclusion funding. They can also ask the Area SENCO for advice if needed. You could request an EHCNA, too.

Thanks for responses from everyone. Seems to unfortunately confirm what I suspected: that there's not really any help available unfortunately.
Thanks @FloatingBean for that insight though I'll definitely push them to get them following it. I feel like it was all forgotten about soon after it was put in place!

My son is autistic speech and communication day, flaps etc. Being autistic is who he is I paid to have the diagnosis because I didn't know anything about autism and was worried. There's not much help at all for autistic kids it's sad.

Oh there is help (if you do a lot of research first to figure out what would help) but sadly it often costs £££.

One of the things about diagnosis is it's a lot harder for the powers that be to argue it's your parenting/it's all in your head/there are no needs/the needs aren't severe enough/etc etc.

My (not entirely tongue in cheek) advice is to save as much as possible. Also work on your relationship as SEN is v hard on that.

Previous poster is correct though - parenting threads/Facebook groups are way more support. I've learnt loads.

Secondary School really wanted one of my children to get assessed / diagnosed with something. I don't know what their motivation for that was. They did make certain accommodations for him, but ultimately the environment was not the best place for him. His primary schools had strung us along, avoided questions about progress, and told us most kids settle down at secondary. Turns out they were wrong. Now he's home educated. I would love more support but don't want to knock on doors of clubs that he doesn't belong to. Knowledge is power. I know nothing and am ignorantly struggling to do the best I can.
Make enquiries as soon as things start going wrong. Don't be a mug like me and let them fob you off.

Thanks for all the advice. I'm pursuing it. It's a shame there's nothing out there but will be pushing the nursery too.

There is support out there, but the majority isn’t based on diagnosis but on needs, and unfortunately you have to push for it.