My 4 year old is still a baby

[autismmumx]

I’m writing this because I just really need some advice because we are getting nowhere with professionals. I know you are not doctors but it would be great if anyone can sign post me or has experience similar who can share some advice with me.

My son is autistic and on the very high end of the spectrum. He is completely non verbal and we communicate at the moment by him leading us. We do understand him but sometimes it’s really hard, for example going through foods until he takes what he wants. It is so upsetting for him because I cannot imagine how hard it must be to not be able to even communicate what he wants to eat. He frustrated so quickly too.

I try my best to reassure that mummy does understand even without words but I really don’t know if he understands.

We have been told that he is severely delayed and he is going to be going to a SEN school and has his ECHP.

My son is amazing. Just amazing. To not be able to communicate, yet finding ways to do so, he is so clever. He is so funny and such a happy little boy. Everyone who meets him adores him and we’re lucky to have a 1:1 at nursery where he goes 3 mornings a week (he can’t cope with any more).

We’ve just started speech & language after 2 years on the waiting list.

A previous paediatrician mentioned that he has wide set eyes and his head is very big and he has a flat nose ridge? She said we could try genetic testing but the doctor never put us forward for it.

My son is still a baby I feel in his mentality and development.

He is still in nappies, it has been so impossible to potty train him but we are trying our best. He will only eat certain foods. He drinks from a bottle because it is the only thing that calms him during a meltdown, we’re trying to introduce him to beakers and cups but he won’t have it. He has meltdowns daily and hits his head so hard. His cries are like a baby cries, I can’t explain it. He can’t draw or read, and he’s started attacking me and his dad (my fiancé and partner of 6 years) every day. He rips my hair out, scratches my face, my arms and legs. There have been moments where he is so strong I cannot get him off me and I cry because it hurts so much and he laughs because he finds my reaction funny.

Every time I talk to someone they say we’re doing everything right; and tell us again that he is very delayed.

But I look at four year olds and they’re playing, drawing, counting, we can’t even go out for dinner as a family because he will refuse to sit and screams. We haven’t been out in so so long.

There have even been times where he takes his nappy off and spreads poo all over his bed on purpose.

I just don’t know what to do. Surely this is more than than autism and a delay?

We have seen every professional so far and I have another doctors appointment tomorrow for him because I just know something is NOT right.

Any advice? Is this normal? I just want him to be happy and have a happy life.

I personally think these are reasonable grounds to ask to be referred to a clinical geneticist. Sotos syndrome springs to mind however there are countless genetic differences linked to autism and many children with autism and developmental delay who don't have any genetic diagnosis.

I'm sorry I can't offer much other practical advice though thankfully other posters are all over it! I wish you and your son the best xxx

@autismmumx big hug from me. This must be a whole jumble of love, pride, joy, physical and mental exhaustion and frustration.Your DS'll be very bright but he has sensory overload - it's akin to a Neuro typical person being blasted by water and trying to carry on regardless which is impossible.

So I'd suggest reducing sensory overload and the easiest way is the reduce noise.
I bought ear plugs for my DD and she says they're brilliant because they reduce the over sensation of noise which helps her reduce anxiety and feel more calm.

Heres an example https://www.flareaudio.com/products/calmer?gad_source=1&gclid=Cj0KCQjwpNuyBhCuARIsANJqL9PZwECZhWw2hMrpb7kgY2mOcmIMuXIe3fugEHJ5Q0NG8Z_h2yser3UaAv3DEALw_wcB

I'm hoping they'll help him too.

Also, try using an alphabet board and help him spell out words using it to communicate.

Best of luck xxx

You sound like such a brilliant Mum @autismmumx and I'm sorry that things are so tough for you.

I think genetic testing could be very useful indeed, especially when clinicians have noted unusual features. This is not to say that there may be any magic cure if a genetic condition is detected but it will provide you with answers and open up a whole network of other parents who are going through similar experiences, offer you advice, a handhold and ultimately give you hope.

I am sure it's easier said than done but it is pointless and heartbreaking to compare your little boy to neurotypical children. He may not be able to colour or do all those things you wish for him, but you can take enormous pride in the progress he is making, even if his steps seem like baby ones at this stage.

One of the children had a language delay and we used the Hanen programme as referenced upthread and it was enlightening. Make sure to get an ENT and audiology appointment to make sure there are no hearing issues which could also impact speech. If and when your child makes progress his communication, this will have an impact on his overall behaviour and frustration.

I hope things improve for you and please do celebrate the daily, little wins. He sounds incredibly loved and it sounds like you are doing a wonderful job xx

Also came on to suggest PECS
https://pecs-unitedkingdom.com/my-child-isnt-talking/

Have you tried Makaton? A friend of mine has a son with some delays due to being around 28 weeks and his speech is delayed, but they have had quite a lot of success with Makaton.

It sounds so hard. Finding the right school could make a huge difference so that's important, as is making sure all his needs are met by his EHCP such as speech therapy. You have to make sure the requirements are in the right part of the EHCP but I can't remember offhand which that is. There will be people on MN who can advise on that.

I would definitely pursue genetic testing, go private if necessary (and possible for you). It could help you know what to expect for his future.

I also agree with the above recommendations for PECs and makaton, get watching Mr Tumble! I'd also add a visual timetable and "now & next" so he knows what to expect. That should help reduce frustration on his part.

Here's hoping the new government provide better for our SEN children.

As a speech therapist I really wouldn’t recommend pecs. It’s a really outdated approach and is taught hand over hand which is likely to be difficult and potential upsetting for a child with sensory needs like yours. It also focuses only on nouns and therefore isn’t really communication.

Can he make choices from objects, does he have a way of indicating if he wants more of something? If yes to both of these things I’d start modelling core boards. These are symbol based boards which focus on useful functional words like more, help, go and stop.

if he can’t do these things yet focus on giving him as many choices throughout the day as possible. Even when you know what he’s going to choose. Hold out both items and name them. If this is tricky make it easier by offering a choice of something you know he loves va something you know he doesn’t. Eg. A biscuit vs broccoli at snack time.

Focus on lots of anticipation games - pushing things down a slope, bubbles, pull back toys etc. leave pauses to give a chance for him to communicate he wants more.

Look up intensive interaction - it’s basically child led play but works brilliantly for lots of little ones with autism. Dave Hewitt’s autism video on YouTube is great.

Focus on what he can understand even if this isn’t words yet. Eg. Does he know that his nappy means it’s time for changing? If so he understands objects. Start thinking about other objects you could use to help him understand. Eg showing him his towel before bath time, his teddy before bed and his plate before lunch. Say the words as you show the items to help him make links.

Is he able to find an app or the play button on a tablet or phone? If so he’s starting to understand pictures and might be ready for you to use these to help him understand. This could be as simple as showing him a photo of nursery before nursery kr a photo of grandma before you go to her house.

He certainly sounds delayed but it is so hard to predict the ongoing needs of little ones with autism at this point. He may well make some big progress just by being at a school with specialist support. It’s certainly not too late for him to develop lots more communication and even words.

Definitely ask again about genetic testing. In most places it’s part of the differential diagnosis for autism. You shouldn’t diagnose until you’ve not ruled out other causes of differences such as fragile x.

He sounds great in many ways.

Careful with the the suggestions of Makaton. If he’s not using gestures such as pointing yet he’s not ready to sign yet.

You could start signing though to help him understand. It’s more visual and will encourage you to slow down and highlight key words.

I belong to a group of mothers of children with a wide range of special needs, formed in the 1980s. We have supported each other through years of fears and frustrations and continue to do so, even alhtough the 'children' are now in their 30s and 40s. We meet up for reunions every year and have a whats app group and regular Zoom meetings. The group has been a lifeline. And we have plenty of laughs together, despite everything. If you can find a community, even a very small one, of parents who are also struggling with the developmental needs of their children, you may find the support you get (and can give, from your experience) will help to sustain you through the difficult times. Good luck!

There'll be other people who can answer more expertly than me on this, but what I can say is that I've seen a friend's son make huge progress incrementally over time, despite not only having autism but also a range of severe developmental delays. So I don't think there's any point at which you should give up hope that your child's quality of life can get better, even if that feels hard to imagine right now.

What a daft suggestion, telling the OP that maybe the doctors have missed Down’s Syndrome, on the basis of this child having wide set eyes.

It won’t be Down’s Syndrome. It’s not easily missed.

@autismmumx You could ask for your son to be referred for genetic testing. If something is found, it won’t make any difference, but it might give you some answers and explain why your son is so delayed beyond “just” autism.

Definitely consider the genetic testing - knowing what you are dealing with and finding the right support group is a part of the battle.

Your description of your little boy reminds me of another gentleman I've known for many years with Smith Magenis syndrome.

I second this, I have such admiration for you, OP, it must be such a struggle for your family especially your DS.

Wishing you all well and hope things improve for your little one 💐

It could be a genetic disorder, which may not really change your approach but possibly could tell you more about what the future holds. We were offered genetic testing for dd but it came up negative, and around 4 she started talking and came on leaps and bounds in motor skills too so it became obvious is was "normal" autism

If he's now getting speech and language therapy, the therapist will focus entirely on alternative and augmentative forms of communication such as PECS and Makaton. Wait for her guidance before you attempt either yourself. PECS in particular has to be taught in a certain way.

Once he's in a special school you'll benefit from their advice and expertise. I taught children like your boy for most of my career in special ed.
You'll get a lot of help once he's there, in communication (they should work with the SALT) and in behaviour management.

Hang in there, make contact with parent groups for children with disabilities and severe autism, and hopefully from September there'll be some light at the end of the tunnel.

PECS could change your life. Is he capable with a tablet/iPad? There are apps you can get like pecs but as an app.

You could try Makaton.

Starting at a specialist school will be good. They will have knowledge and experience and will be able to advise specifically for your child.

Do you know any other parents with autistic children or other disabilities? I've found there is no support from services but other mums have kept me going.

Chase the genetic testing definitely. But don't hold out hope that finding out what's going on will fix anything you will still have the child you have

Apologies if it's already been mentioned but I found it incredibly helpful when I found out: the laughter may be a 'fight' response when your son feels out of control. For me, it was hugely difficult when my kid would hurt me & then laugh at my pain like it was the most delightful thing. Knowing that the laughter is dysregulation - a (very counterproductive!) way to express fear and anguish - makes it easier to override that initial emotional reaction when it happens. Most people still thinks it sounds like MiniFool is thrilled they've hurt me, but I can tell the difference now and it makes a huge difference to how well I cope with it. Only one detail of course, but I hope it helps.

I don't have any advice but just wanted to say that it sounds like you're doing amazingly, OP. You're helping your son to communicate and dealing with so much while still showing him you love him. ❤

Give him more time, OP. He's still very young, especially for a non-verbal ASD child.

2 family members and a friend were in very similar places with their 4 year old ASD children (non-verbal, special school, nappies etc) but 2 of the 3 are in very different places now (talking & switched to mainstream primary) and the other talking but homeschooled. I think one of them spoke at 5 and the other two at 6 and all three were speaking full sentences within a couple of weeks - all of the words were in there, they just weren't speaking.

DS is communicating with you, if non-verbal. The anger is very common in non-verbal ASD kids due to frustration.

Give him time, OP.

And please do try to give yourself some time, too. It sounds like you need a break - something that doesn't come easily to ASD Mums. I know.x.

Re: the smearing, had anyone pointed you to the popper all in one vests with short legs, for children with disabilities? They would prevent him getting his hands into his nappy.

Here's one company
https://www.fledglings.org.uk/collections/popper-vests-for-special-needs

https://www.medicalnewstoday.com/articles/320549

Has your son's hearing being checked, OP? If there is a problem, it might partly explain his being non-verbal.

Absolutely look into signing if you haven't already.

My ds2 has Waardenburg Syndrome.

This was my first thought too - I am deaf and a lot of friends have Waadenburg's syndrome and they have the wide set eyes and flat nose bridge as you described. I'm not sure it'd explain the autism/developmental delays though.