Help please - autistic 4 year old

[Worriedmotheroftwo]

Hi all. I'm pretty sure my 4 year old is autistic, and nursery have raised their concerns with me too. He is seeing a HV next week and we will go from there.

However, regardless of a diagnosis, I know he definitely struggles with social-emotional skills. He is wonderful most of the time, and very smart, but has sudden very angry outbursts, which might involve shouting, screaming, throwing or hitting- or all of the above. He has recently begun hitting his friends and hitting his nursery teachers when angry. I'm beside myself with worry over this.

I am struggling to get help through GP/HV (I had to REALLY push for this appointment - it took weeks for me to get in touch with a HV at all) so I am wondering what private options there are for support. I know I can get a private diagnosis, but what about help with social-emotional development? We've gone through the typical advice of breathing, counting etc, but nothing is working and his behaviour is escalating. What sort of person can help my son, and how can I find such a person?

Thanks so much, from a very very worried parent... I love my son SO much and it's breaking my heart to see him struggling like this.

My DS is 4 and from the sound of it has a few more needs than yours (he also has a speech delay and can get frustrated when trying to communicate), so not an exact mirror image of your situation, but anyway. We're finding advice from an OT has been really useful right now and she covers all sorts of things that may be useful for your DS. We're having spells of hitting and outbursts too that are due to frustration and sensory issues and she's provided great advice on this.

DS doesn't attend regular therapy sessions, the OT has just assessed him and provided me with tailored advice at this stage. It's been really helpful and also not as expensive as I thought it would be because I'm doing the "therapy" activities myself.

Hello. Your son sounds similar to how mine presented around that age.

Firstly a lot of little boys go through a developmental leap around this age so it may well be he could grow out of it and it's nothing to worry about. That said nurseries and schools see a LOT of kids so they get a sixth sense for if something might be diagnosably going on, and if they are raising with you it's probably worth getting him checked out.

Go to your GP who can refer you to a pediatrician. A paediatrician can do a full assessment of your child and what's going on as autism is one thing (it turned out to be the case for my son), but there are all sorts of things like say, hearing problems, or different learning difficulties, or medical issues which could cause frustrated outbursts in kids so they want to look at everything in the round. I'm really glad we did this step as my son doesn't present as how I'd imagined autistic kids would be (he's very chatty, friendly and scatterbrained) so it helped me make my peace with the diagnosis that I had seen for myself how they'd ruled everything else out.

You are right that waiting lists for NHS paediatricians are often really long depending on where you live. You can go on the BUPA website and just search for private doctors in your area and get some quotes. This bit is a bit manual and annoying but they don't bite. Just call them and explain your worries and they'll say if they can help or not.

You'll hear about lots of different professionals like clinical psychologists, occupational therapists and speech and language therapists. Only a doctor can provide a diagnosis and I would suggest this is the first place to start. Because you could pay a lot of money to therapists and if it turned out (for example) your child actually had a hearing problem, and was not autistic, the therapy would have been totally wrong for the problem if that makes sense.

If you do get to a point where other things are ruled out and it [probably] is autism I would ask any doctor to use the same methods for diagnosis as the NHS uses (there are different diagnostic tools that can be used). We did this and the NHS were helpful in accepting the diagnosis onto their record and not re-doing it when we eventually got to the top of the waiting list. Not all trusts are as sensible but you can at least give yourself the chance.

If you do get a diagnosis you can post back here for more support but the professional who does the diagnosis can help with what the best long term therapies for your child are as no two autistic kids are the same.

Also I realised that I answered your questions about diagnosis without answering the second half about help.

I do still think getting a diagnosis first would be valuable as the techniques you would use with an autistic child are pretty different to what you'd use with a neurotypical kid. Neurotypicals often do better with firm boundaries etc where many autistic kids need boundaries to be flexed.

Some of the people who could help:

Clinical psychologist could spend time with the family and help work with you on approaches you as parents and other carers like school could apply to help him de-escalate. At this age they won't work with the kid as much as the child is too little to really understand and engage with strategies.

Occupational therapist can help with physical exercises to help with any sensory issues if that's what might be causing the issue,* or exercises to help release any pent up anger.

Speech and language therapist: we were late to the party with this one as my son 'talks' really well. They can also help with social communication and self regulation. It's been great for my son.

*If he has regular meltdowns I would really encourage tracking them. You can look up something called an 'ABC' chart where you basically note down what happened before, to cause the meltdown or violence, what the behaviour was, and what happened after. You may see common themes, like my son always had meltdowns around lunchtime in school. Each time there was a different 'reason' but the location was the common denominator. It turned out the sensory environment of the lunch hall was overwhelming but he himself couldn't recognise this so would flip about something else each day. It's good detective work because if you find there are certain triggers, you then have something to give professionals to work with.

Books if you are a reader:

My child is different
and
The explosive child

Both are not specific to autism but talk more about kids with behavioural challenges.

What support is nursery providing? Have you spoken to the school’s SENCO?

SALT and OT can help. For some, play therapy helps too. Schools sometimes use Zones of Regulation which can help.

In many areas you can self refer for ASD assessment (in some areas this is via paeds and in others it is via CAMHS) and to SALT and OT. If you can’t in your area and the HV won’t refer the nursery may be able to. If you do want to go private SALT, OT and play therapy are available.

Thanks very much indeed. The nursery do have him on an ABC chart. They are lovely, and are very understanding, and are trying lots of things, but I don't think are experts in this area. He'll only be there for a few more weeks anyway before school. We have spoken to the school. It is a private school, so not 100% this is the right option, but we do think the very small classes will help him - alternative is a massive 3-form intake primary school with 30 in each class. Hard to know what to do for the best. If the private school doesn't work out, we will look at moving him.

I'm part way through The Explosive Cchild actually, and it's very good!

Thanks for the info on possible next steps. A lot of that is new info to me and very helpful. Also investigating his huge tonsils as I read that this can lead to ADHD-type behaviours...?

Yeah I've heard the same, one friend's child they thought had ADHD but he was actually just permanently exhausted as with huge tonsils he wasn't sleeping properly. There are loads of things that are worth investigating. May be autism. May be something else.

With regards ADHD diagnoses my son has both ADHD and autism diagnosis and goes to a school where loads of kids have both. In my view the two overlap so much as to be a bit pointless to diagnose separately. I think in the next 10 years professionals will go to just a banner of neurodiversity and different symptoms within it like hyperactivity, social issues, etc etc. Anyways if you go to a decent paediatrician they can help as to whether they think it's worth going for an autism assessment or an adhd one first or neither or both.

Something to bear in mind is that adhd you can medicate for, autism you can't.

With schools and nurseries... the thing about nursery is even if they were experts in autism, every autistic kid is so different so it's just trial and error. If he really does turn out to be special needs you as his mum will need to become the world expert on his presentation, the things he struggles with and so on to advocate for what he needs because even experts won't know for sure. They will have more of a sense of where to start and what might work but they will never know for sure. Good luck with the private school. Some people will tell you private is less good for SEN but honestly every school, and child, is so different you'll just need to try it and see. Good luck x

It is worth asking the school about an IEP (or whatever they call their SEN plans) and what adjustments and support they can provide. Sadly, not all independent schools are support of pupils with SEN, and when they are they often charge extra.

Too late now, but the nursery could have requested advice from the Area SENCO. And, applied for early years inclusion funding if necessary.

Some people find Yvonne Newbold’s resources helpful.