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.

Are you on any medication, or were you when you were pregnant?

Some conditions are caused by medication passing over to the unborn child in utero. My son has Fetal Valproate Syndrome, which includes Autism, wide set eyes, a lack of bridge to his nose, no philtrum, thin upper lip, etc.

It was caused by me being prescribes Sodium Valproate (Epilim) in pregnancy.

My son is 23, has a learning disability and a wide range of symptoms (we say, if it has 3 letters, he'll have it!).

Look back and see if you were prescribed anything in pregnancy - if so, you should have been warned of any risk, so it's not your fault. Over 20000 children in the UK have Fetal Valproate Syndrome and there is support available from groups set up by mothers.

Valproate isn't given to pregnant women now, and women on medication and their babies are given extra monitoring from birth.

Unfortunately, while it shouldn't be, I know of a woman who is pregnant and prescribed it and wasn't given information as part of the Pregnancy Prevention Programme. I also know of 3 other mothers who are on Valproate and have had children within the last year. They too, were not informed of the risks, so it is still happening, particularly where women's epilepsy is well controlled and they are not routinely seen by a consultant. Many of us have not seen consultants for years, particularly those of us who are seizure free - this is where the greatest risk of Fetal Valproate Syndrome persists.

Not all women who are prescribed Valproate have yet to be called in for a discussion about their medication.

I personally wouldn't go private for genetic testing. Yes if they offer it on the nhs but there are so many more things to spend money that are more helpful. My DS was similar to yours at your age. Also early autism diagnosis.
We later found he has a deletion on his 2p.16.3 chromosome. I'm in all the groups/had all the leaflets. It means very little other than just knowing why. All the children are vastly different (lots have the wide bridge thing you have mentioned including my boy). It doesn't tell me anything about him. SALT, OT, behavioural therapy, courses on autism more generally and how it might present and how to work out what is causing the issue has been much more helpful.

I am appalled at the 2 year wait for speech therapy - he really does need help to communicate.

I can only send you a hug - what a massive challenge - and endorse the advice that has come from those with relevant experience.

I get so very cross that people with these sorts of challenges have to battle to get the proper advice and services - it is just an additional burden. I went through so much battling to get proper help for my late OH. It felt so very unfair when I already had so much to contend with.

Aw you are not alone. My son is 2 and incredible delayed. He doesn’t play like other children and seems in a world of his own. He doesn’t use cutlery, still eats like a weaning baby, doesn’t talk or draw, is obsessed with sequences and repetition. We were thinking autism however whilst pregnant his NT came back high at the 12 weeks scan and was told he had a 1/33 chance of having downs. He doesn’t necessarily look like he does however some people don’t. It’s bloody tough and I just wanted to say I understand.

My niece has adopted a little boy with chromosonal.problems, he has some of the features and behaviours you describe. However he's only 2 1/2 and is catching up slowly, what helped him with communication was Mr Tumble on Cbeebies, he teaches sign language in a fun, friendly age appropriate way, and this was how this little boy learned to communicate, he's starting to speak a little now but still happily signs most of his needs. My heart goes out to you, as much as you love him it's so hard. 🥰🥰

Ok well I gently ask you @Charmatt to refrain from going down the route of suggesting mum might be to blame for her child's seemingly significant disabilities. She almost certainly is NOT.

Might he have a mild form of hydrocephalus? Just thinking out loud, with the big head, eyes wide apart, wide nose bridge. Those are nót symptoms of Down Syndrom by the way. If so, he might experience pressure on his brain, that could cause headaches and meltdowns and agressive behaviour. I think your boy might benefit from a brainscan to make clear (litteraly) what's in his head. Wishing you courage ❤️‍🩹

I’m pretty sure OP would’ve made the link if she was on Valproate.

The truth is we don’t know what’s causing the rise in autism and non verbal children, it’s likely a combination of things plus perhaps genetics. It is a worry and my heart goes out to people like OP. I really hope the government does something to recognise this issue and support parents because it seems to be a growing crisis.

I gave the example of Valproate, but that isn't the only substance that is teratogenic. Other medications and other substances can also be teratogens.

There is no need to be so patronising!

There is no need to be here suggesting that women are making their children disabled in utero either @Charmatt - you have no grounds to be doing that

Says the person suggesting OP’s child is disabled because she ‘must’ve taken something, are you sure you didn’t’

I haven’t any advice for you , but I wanted to say that you sound like a wonderful caring person. It must be very hard for you as well as for your son x

People shouldn’t be trying to diagnose OP’s son. OP, go back to your GP and ask for genetic testing. If you know what condition he has you are in a better position to find support, whether it is through organisations that support families or other avenues. It must be incredibly frustrating dealing with the unknown and having to manage challenging behaviour.

Your son sounds like my nephew who is autistic with GDD (global development delay)
He is 7 and non verbal, in nappies and attends a SEN school.

The school is amazing for him. He has really progressed with his communication and whilst he still isn't speaking words he is trying to use PECs and leading his teachers and parents to what he is trying to communicate (ie taking them to the tap because he is thirsty, he didn't do anything like that when he first started school so it's a huge step).

My nephew absolutely loves school. He waits so patiently (but excitedly!) for the bus in the mornings and school have been a great help for the whole family in trying to underhand his needs and help him progress.
SALT is part of the daily routine at school for example so you should find if your son is going to a SEN school it will help him hugely.

Is your son under a paediatrician? My nephew has been since being diagnosed at 3. I would ask about GDD alongside the autism as it sounds likely to me.
Wishing you and your family all the best.

Well done you - you are parenting beautifully and obviously a very loving Mum, in what is a terribly hard situation. When children are very young, the phrase ‘developmental delay’ is used, but the likelihood is that your son has learning difficulties/ cognitive impairments that will be ongoing, along with the autism. That is a difficult thing to face, but maybe easier than constantly comparing him to other kids his age and feeling he’s failing. Try to think of him as being on a different path. That doesn’t mean that he won’t make any progress, far from it, but it is likely that he will need special communication support, and help with sensory issues. Staff at his school will help you to know what to expect and you will meet other Mums and pick up ideas. Doctors may be able to discern a genetic underlying ‘cause’ but to be honest they will not help you manage your child’s behaviour or give you much practical help - you will get that from teachers and therapists and other parents - and the internet!! Pictures and photos of things he might like to ask for may be helpful - though he is still very young and may not yet relate to 2 dimensional representations - either he can point to his choice or give you the picture (picture exchange communication system = PECS). A few basic manual signs (Makaton - Mr. Tumble!) also may help.
Remember that he won’t use these unless he understands what you are saying to him and how the pictures or signs could help, so you need to use them to him for a good long while before expecting him to use them back to you. My heart goes out to you, it IS hard, but you can do it! Where are you in the UK? If in the northwest, this company might be able to help set you on the right path or
point you to someone that can. https://www.asdclinic.co.uk/about-us/our-clinics.php

Sorry I don't have any experience in this but it sounds like a really difficult situation, as others have said you obviously love your son very much and he's lucky to have you. Just know when he has any physical outbursts it's nothing to do with you, I imagine he just finds it hard to deal with what's going on at the time and I bet anything he loves you so much. I know you say he goes to nursery three mornings a week but is there any respite care you can access? Locally to me there is a brilliant charity that offers support and respite for parents and carers in situations similar to yours, just because it must be exhausting to deal with this all the time for both you and your son. I hope you find something soon that makes life easier x

I think this could well be ASC and a developmental delay. I have access to widget which is a range of pictures and words. I would be happy to create some for you, that way he can point to what he needs quickly and you could sort them into foods, toilet needs etc. No pressure but please feel free to message me if I can help. You are doing a great job 💕

I work in a special school with lots of non verbal autistic children who are delayed cognitively. This does sound like what they have told you. Autism is a spectrum and the variety of needs I come across on a daily basis is huge. Your son sounds very like my of the children I work with. You are definitely doing everything right. You need to stop looking at other families and compare my yourself though. You might need to grieve for the life you thought you would have. As your son goes through school he might improve with his already, communication, behaviour, ability to read and write etc but also he might not. I work with children up to the age of 18 who are autistic with learning disabilities and who are cognitively the age of a baby/toddler. It might be worth exploring the genetic route due to the things mentioned to you but you’d need to be really pushy rather than just waiting for it to happen. But even with a genetic answer you might not be much further forward.

Try also looking online for examples of PECs communication cards. You can print off and laminate lots of little pictures to help him build his communication up. It takes a while. But introduce important things first like yes, no, more, finished. You can even print off pictures off his favourite foods to have on a choice chart to point at. Favourite toys etc.

One thing you can do is ask your local authority for a childrens social care assessment and family assessment as you might be entitled to some money/direct payments for either respite or to pay for a PA to come to your house and support you or take him out and give you a break. Once he starts school you could see if there’s a parents drop you can connect with at the school so you can talk with other parents with similar experiences. There are also some local charities which may offer sessions after school and on weekends and holidays so that you can take him to things for his ability.

Sorry for what you are going through. It sounds really tough and I do hope you can get some additional support.

Have a look into Makaton if you haven’t already. It’s like a child friendly version of sign language. Does his nursery use PEC charts with him? Perhaps you could get some for home. Can you print off pictures of food choices, so he can bring a picture to you rather than rummaging through the kitchen cupboards?

I can tell how much you love your little boy OP, my LB is 2 and on the 4th we have an ASD assessment and a SALT assessment straight after. I came to say that have you tried using flash cards for communication? They may really help him. Take photos of everything he likes and uses, and things like pjs, bed, bath etc and print them off. That way when DS is struggling to communicate he can point to the thing he’s after. Same for you, if it’s bed time you can show him the flash card with his pyjamas and his bed etc, or whatever works for you. I have no advice re professionals as I’m only just starting our asd journey (I have 2 dc in school awaiting ADHD assessments too!) but I’m wishing you all the luck and love xx

We are having genetic testing under the NHS at the moment. Although it is interesting, it will not make any difference to my children's lives if they find anything. I don't know how I feel about it but we are going along with it.

They might be thinking Fragile X, the most common single gene cause of autism.

My son's paediatrician had us get his blood tested (on the NHS) for that and other genetic conditions, we should get the results towards the end of the year. He's 9, so whatever he does or doesn't have genetics wise, he has been healthy this long with it, other than eczema.

They filled four or five vials while I wrapped my legs round him and fed him Smarties!

Do you have a social worker? If no please contact. Do not think of it as a negative. A social worker will fight your corner and assist in helping with everything you need for your child.