Autism

[Cantthinkofausernametbh]

I found out my 19 month old toddler is autistic, I always pushed this thought to the back of my mind but knew as he showed a lot of the early indicators. I have a hv coming to give me some more advice but please can you let me know what you did with your autistic child to make life easier for them? Does a change of diet help? Speech therapy? How can I imply speech therapy at home? I feel completely heartbroken I had a very tough time in school whilst I was growing up and had no friends. Knowing my little one could go like this his whole life is horrible. I don’t know where to begin I am willing to do anything to make this easier for him.

TheVanguardSix your post was so helpful, thank you.

My DD received a diagnosis of ASD last month at the age of 2 years and 3 months. The diagnosis was made by the Multi-Disciplinary Team consisting of her paediatrician, speech and language therapist, physiotherapist and occupational therapist.

Apart from the first ENT appointment which we had when she was 1 year and 1 month and was private, all other appointments have been under the NHS.

Over the last year, DD has had lots of appointments with speech and language therapist, occupational therapist, physiotherapist, audiologists and a paediatrician. She also attends a private nursery, and we have seen amazing progress in her with their support.

Now DD has a diagnosis, we are about to go on the EarlyBird programme founded by the National Autistic Society which was recommended by the paediatrician. We have done a Makaton course to help her communication, and are already seeing her engage more. We've also got more intensive speech and language sessions arranged as she's currently babbling, though no clear words.

From what people have said here, it sounds like we have been unusual in getting a diagnosis for her early, but I can vouch that it does happen.

My brother was diagnosed at 19 months at the Rygate Centre in Sheffield nearly 30 years ago - so time those saying it's too young then you are wrong. I also now work with diagnostic services and many families where I work in Greater Manchester have a diagnosis by 2.

Can I also ask about diagnosis? I've never heard of autism diagnosed before the age of 3, and a diagnosis has to be made by a paediatrician. A HV can have suspicions a child has autism, but they can't diagnose them.

Anyway, my DD is now 5 and was diagnosed aged 4. Best tips I can give you for your DS if he has autism is:

1. Push, push, push for extra support and for an EHCP. Appeal and argue every rejection. Most LA's don't want to pay the money for extra support and will reject requests for EHCPs for as long as possible and make the process as difficult as possible, so you have to keep trying and be persistent.
2. If it's stupid but it works / helps, then it isn't stupid.
3. Accept challenges and work around them rather than fight them. I spent ridiculous amounts of time trying to get DD to try new foods, which was a waste of energy and just left her hungry and me frustrated. Now I just accept it and give her what she will eat. Or if DD is at a party and having a sensory meltdown, we now just leave rather than just force her to stay to be polite.

Echoing PP, a health visitor can only raise concerns, NOT diagnose. I speak as a professional who completes ASD assessments. Speak to your HV and request a referral for assessment if this isn’t already in progress.

I'm sure the HV had genuine reasons for expressing her concerns & hopefully she referred through relevant channels - the earlier the better IMO if there are issues - more chance of appropriate support - very best wishes OP 💐

This is sounds very upsetting but I agree with others that this is in no way a diagnosis and your child is still very young.

I hope you get all the support you need in the coming months and years but I'd urge you to go careful on what you think needs to happen to 'help' someone with autism. Your saying 'will a change of diet help?' frightens me. You can't cure autism, you can't alleviate its symptoms. There aren't therapies that make an autistic child 'normal'. That's a dangerous path to go down and the internet is full of damaging, dangerous misinformation about autism 'cures'.

HV's don't diagnose autism and have no specialist knowledge of child development. She should refer you to a paediatrician.

Most Autism traits are normal Toddler behaviour, flapping, spinning Schemas and so on are all normal.

In my borough, the Social Communication Team definitely want ASD possibility to be discussed with parents before a referral is accepted. This is so parents are making an informed decision over whether to go ahead with the process.
Seems reasonable to me that a HV will listen to a parent's concerns and confirm that they meet criteria for referral.
I don't know why people are frothing about HVs not being able to diagnose, often they are the gateway to get to the diagnostic pathway itself.

often they are the gateway to get to the diagnostic pathway itself.

Absolutely. Our HV was an absolute lifesaver with DS2 and referrals.

However, even when we asked her directly if she thought it was ASD her response was "Possibly but let's see what the pediatrician says" then went into detail about what the next steps would be.

It was all very reassuring.

The HV here has clearly failed to explain the diagnostic process to OP.

Wow I’ve been waiting longer than 19 months for an assessment for my 7 year old! Should I be chasing it up?!

Our HV suggested my son might be autistic at our 18 month check.

I was in denial and did not follow it up.

He was diagnosed by our core diagnostic team over a long period of time after school flagged him 5 years later.

I think experienced HVs can tell early on.

Also the OP is actually asking for practical suggestions as she is desperately worried right now.

OP I suggest you try the SN boards, as 90% of responses here have not been helpful

OP I assume you are in the same situation I was where your DS has been screened by the HV and referred to the developmental paed team. The HV doesn't diagnose, just screens and says whether or not to refer. Yes the decision to refer can feel like a diagnosis - I remember feeling that way myself, "oh this is it, he has this thing" but the paediatrician who saw us first explained that it was a long journey we were embarking on before there would be any diagnosis - if ever.

In our case there never was any diagnosis, we dropped out of the pathway as many of the traits and behaviours started reducing over the next couple of years or he figured out ways of dealing with his feelings. He still has many of them when I think about it, but they are in no way "pathological" or impair his social or emotional function - eg he still likes his routines, predictability, likes going back to the same places on holiday and has to be dragged to try new things (but once he does he loves them), still flaps his arms and jumps up and down when he is excited but so does his entire class at school, hates tags on clothes and waistbands on trousers because they aren't comfy, still gets obsessional about odd things like squid or black holes and has to learn everything about them and tell you everything he knows in an unending stream of chat (he has a kind of eidetic memory as well as perfect pitch).

Mine was diagnosed before 2, he was under a paediatrician from birth for a chromosome translation. He had the multi disciplinary around 18mths

Fwiw at 20 months it was fairly obvious my lo was on the spectrum.

Waiting for the diagnosis however meant that salt could intervene and other issues be addressed. So whereas at 20 months lo was expected to need special schools and be very low performing due to the with a global developmental delay, now when the official diagnosis was given after watchful waiting, is deemed high performing.

Didn't change the diagnosis, but has imo given my lo a fighting chance that school etc see the child first, not the diagnosis as can and does happen sadly.

So I personally, would get support and pursue the diagnosis later. Early bird groups, portage, salt, occupational therapy, sen groups are all valuable and available now if appropriate.

As people have said, hv can't diagnose autism. My daughters nursery were convinced she was at aged 3, despite me being a nurse specialist in autism they told me I was wrong and referred her to a paediatrician who later told me she wasnt and the nursery were wrong, so suspicions are not always right and you need to wait for a formal diagnosis if you go down this route x

My niece was diagnosed at 2. We knew before a year old. She was so different to other babies even then. The HV agreed very quickly, referred her and she was diagnosed within minutes of starting her first appointment. There was no question.

Sometimes it really is that obvious.

My son had obvious signs before 18 months but it would still have been wrong for a HV to diagnose it. Fine to agree they can see the behaviours that the parent sees but any actual saying it is autism should be left to those in a position to diagnose it.

Op- I am no more qualified to diagnose autism than the HV, it’s something that takes a long time usually and is a multi disciplinary process with several diagnostic tests.
Once the results are discussed then usually the parents are invited to a meeting where the diagnosis ( or not ) is discussed. It’s not something that is just decided on a whim, however obvious the signs are.

I speak from experience. At the age of 3 I knew ds was different, he was pretty much non verbal and was obsessed with all things Egypt. Doctor dismissed my concerns. Fast forward to starting school- no concerns, it was extremely frustrating for me as several teachers commented on his eye contact being good- as if that defines an autistic person!

Anyway to cut a long story short, he was eventually diagnosed at 8yrs 9 months and I read every single thing I could get my hands on. He’s 17 next week and is doing his A levels in a very sought after sixth form college, did fantastic in his GCSE’s and has a huge group of supportive friends who love the bones of him.

We have a lot of autism within our family on various parts of the spectrum. 5/8 grandchildren diagnosed and I’m fortunate that ds is high functioning. Autism is not a death sentence. I say that as my idiot NDN is an anti vaxxer who said she won’t get her dc vaccinated as she’s scared of them “catching autism” seriously can’t argue with stupid. I am very proud of my ds and what he has achieved and I found out last year at the age of 41 that I have ADD which makes perfect sense.

Go and see a doctor and take a list of all of your concerns. HV do a wonderful job but please don’t interpret what she said and label your 19 month old just yet.

If it turns out that your child is autistic, you may want to find yourself some support groups which listen to autistic adults and children, and ask them what they felt was most helpful long term.

Many many autistic adults will tell you that they find eye contact painful, and that years and years of having to be compliant, follow constant instructions, being made to behave in a way that is socially acceptable to neuro typical adults, has left them with huge anxiety and major mental health issues.

Please ignore anything that tells you it will help them "normalise", or that it requires hours and hours of therapy. Not only is this extremely expensive, it is also essentially a regime to try and change the way your child functions.

Try reading Steve Silberman - Neurotribes, or watch some of his YouTube stuff.

Meanwhile, TEDtalk - Everything You Know About Autism Is Wrong, with Jac Den Houten is fantastic.

Good luck, and hope the next few months bring answers.

Wow.
Like the others say, a HV has absolutely no knowledge enough to even make that suggestion.

A diagnosis involves several assessments and would have nothing to do with your HV.

If you are concerned I would suggest visiting your GP and putting your case forward.

But no, your toddler hasn’t been diagnosed with autism.

Whilst HV are not officially able to diagnose ASD they are experienced and understand what will lead to a diagnosis or not. I’m a nursery SENCO and although we only take children form 2yrs old, I have seen children visit at 20mths and it is clear there is an issue with their development and often it’s clear enough that those issues fit an ASD diagnosis esp if fairly severe. I have known 3 children in the last year diagnosed by 2yrs 4mths so it does happen. OP you need to allow yourself to process this initial diagnosis/information first before you move on as it is a hard message to hear. Get as many professionals involved as possible, find a really good nursery with a good SENCO, if you are in kent I know some. Apply for DLA funding and you will receive free for two funding for him to go to nursery 15hrs a week from when he turns 2 (you may get this anyway even without DLA- have a look online for the criteria). Good luck OP and stay strong, loving your boy is he best thing you can do for him at this point xx

@Xiaoxiong this sounds so like my son.
I was worried as a baby “something” was up. He cried all the time and the only people he liked were me and DH. If anyone else tried to make eye contact - either a stranger or a friend who saw him weekly or anyone in between - he would be hysterical and difficult to calm down. No one had seen him smile until he was 1yr.
Then everything got a bit more normal. He was super talkative very quickly, more quickly than the other babies and toddlers I knew. This seemed to make him happy and he then wasn’t as afraid of other people.

Clothes have always been the bane of my life and it took minimum 20 minutes to force him into something until about 5 months a go when he became obsessed with a certain outfit and has now worn that outfit every day. Every. Day.
He has obsessions which I think is pretty common at his age but seem to go beyond that a bit - as in all he’ll want to talk about or play or read about us x and then 6 months later it’ll switch as quickly as it started and it’ll become y.
He has flapped but then I flapped as a child (and still find myself doing it as an adult sometimes) and so do lots.
I think lots of people have probably suspected he is autistic for a number of reasons but as the person who knows him best I don’t have any reason to think he is. I actually think he’s a bit like me.

It’s nice reading about other people’s quirky children

OP - I hope the HV’s initial observations start to right pathway and you get the right support. I have a close relative with ASD that was always super obvious from toddlerhood but for whatever reason his parents didn’t want to peruse it and his diagnosis happened about 17 or 18. In retrospect as early as possible would definitely have been the right approach.

"Like the others say, a HV has absolutely no knowledge enough to even make that suggestion."

That is not quite true. Some HV will be knowledgeable and sometimes information from the HV will be used in the diagnostic process. What shouldn't happen is people going beyond their professional remit.
This also applies to professionals who say they disagree with a diagnosis that has been given, when they are not qualified to do so.