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 went to a fascinating seminar by Joanna Grace tsp (the sensory project) maybe worth looking her up. The poo smearing is very common in Autism- the smell, the warmth, it’s all harking back to primal times.

OP is looking for answers. I asked the following question to help identify or eliminate areas of investigation:

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

Any genetic exploration would also include the looking at both parents medical history and ruling out other causes.

Keep your I'll informed judgemental crap to yourself.

No mother 'makes' their child disabled unless they know what the risks are.

I didn't cause my son's condition - it was caused by a number of factors out of my control and mostly by the government deliberately suppressing information. Your allegation is offensive!

Hi OP,

This sounds so hard, I'm so so sorry. Your little boy is very lucky to have a mum who obviously loves him so much. I would definitely go with genetic testing, as it will give you a better idea of his potential development.

The best advice I can give you is not to try to get him to do things he isn't ready for. He is clearly hugely developmentally delayed, so it really doesn't matter that he's still in nappies or that he only drinks from a bottle. My niece is 12 and is still in nappies and still only drinks from a bottle. She has a chromosomal disorder which means she will never lead a 'normal' life. Her OT tried to give her a target of "Drinking from a cup", and my sister refused to accept that as a target. The OT said, "But you don't want her to be 18 and still drinking from a bottle!" My sister replied that she couldn't give a shit if my niece was still drinking from a bottle at 18, or 28, or 38, since that would have zero impact on my niece's happiness or quality of life.

Parents of children with severe SEN need to prioritise which things to focus on with their children, so don't waste time on anything which isn't going to make you or your child happier.

My niece is SUCH a happy and lovely little soul, by the way. She, too, is non-verbal, but is excellent at communicating what she needs to, and is always smiling and laughing. Please don't think that your son's developmental delay means he can't be happy.

I have a lot of experience with everything you are describing and sending a huge hug because it's a hard, long journey.
1st step- get referred to your local developmental paediatric team
2nd step - push for genetic testing - it definitely sounds like something is going on and it's only when you know which chromosomes are affected that your can gain a fuller picture of your child and what may happen in the future.. if it is a rare chromosome disorder then you can join a charity like Unique and meet parents and children with similar changes which is very helpful to learn what challenges may develop as they grow
3rd step- therapy , therapy , therapy-as much early on as you can afford .. speech therapy, OT with some sensory integration therapy and physio. It sounds like you will qualify for DLA which is incredibly helpful in paying for some private therapy you can supplement with as the nhs lists are incredibly over stretched
4th step -makaton signing at home - the first words we had were the ones that they could sign first - it will also help reduce the frustration.. start with food, drink, milk, more , all done.

I really hope you are successful in getting all the support you need.

OP you've received some fantastic advice on this thread. I just wanted to add one thing regarding the genetic testing - even if it doesn't mean much in terms of being able to "treat" your son's condition, it can be hugely valuable in informing your decisions about future children.

If you have a child with a known genetic condition, and become pregnant again, you may be able to have prenatal diagnosis to see if the unborn child will have the same - which may or may not inform a decision around continuing with the pregnancy. Or it may be possible to have (on the NHS) IVF where the embryos are tested for the condition and only those without it are implanted. Depending on the condition, if it's something that runs in families, say an autosomal recessive thing, it can be really useful information for other relatives who are thinking of having children.

So IME it goes well beyond "it doesn't change anything because the condition isn't treatable".

I'm wondering if he has Foetal Alcohol Spectrum Disorder. Global delay is also a disability that can run alongside Autism. ASD is a diagnosis that many people assume comes with disabilities that actually neurotypical folk have just as much. He definitely has more than just ASD. Global delay or FASD requires specialist schooling and some children are very developmentally behind.

@pollymere it is pretty awful to suggest someone's child may have foetal alcohol syndrome without any evidence.

Autism is a massive spectrum it could just be that he's profoundly autistic, my son is 14 now and severely autistic, he's still non verbal hexpresents as though he also has severe learning disabilities, but who knows really,wether it's autism and learning disabilities or he's profoundly autistic
Regarding genetic testing my son had a microarray blood test
When he was three and a chromosome deletion was found, which the geneticists think is the underlying cause of his complex disabilities
In his case it was De novo ,but other people can inherit from a parent
Other than giving us an answer it doesnt really help and how ,chromosome disorder, s can impact someone can vary massively from person to person
My Son has been at a special school since reception both primary and secondary, and they are fantastic places
We have just started to get regular overnight respite ( two nights a month )
What helped me was meeting parents whose children had similar needs to mine.

Are you suggesting the Op drank throughout her pregnancy??

For goodness sake, why on earth are people trying to diagnose a chilld that they don't know and have never met, and with no medical qualifications?
It's no help to OP at all, and in some cases it's been outright offensive.

All the best, OP. You're on a hard road, but hopefully attending a specialist school will help his communication and frustration a lot, and provide you with much more support.

The op should definitely not be accused of drinking in pregnancy or that her DS has FASD, we have no idea of her history or her Ds history. That aside, FASD can be caused by a smaller amount of alcohol, not necessarily drinking throughout pregnancy, there’s just a higher risk of it the more you drink but any alcohol can cause it. Nothing to do with the OP though.

I’m guessing it’s been picked up in because of the wide set eyes comment, but there’s lots of other things that could cause this.

Noonans Syndrome?

Some people only need a glass before they even know they are pregnant for FAS. It is very ignorant to believe that it's caused by continuous drinking throughout pregnancy and unfair to people whose children have this condition. I only asked because they were examining the head of OP's child. OP mentioned GDD I believe which children both with and without ASD can have.

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.

Focus on this part of your post. Your little boy is SO loved and, from the sounds of things, you're doing everything you can to support him. SLT will be a huge support fir you. Not read any other posts but have you been in touch with OT and do you know about sensory training? That will help massively in terms of his sensory regulation.
Read a couple of PPs mention Hanen: More Than Words - definitely check this out if your SLT hasn't offered it already.

Sorry if I'm repeating PP suggestions. I'm an SLT and work with children like your little one. It does sound like he has autism and possibly global developmental delay (only a paediatrician can diagnose this though). Not sure about genetics but you could request genetic testing if you feel it would be helpful.

Let's not frighten people who.have had a small amount of alcohol in pregnancy ,the odd glass is unlikely to.have much impact.

In the original research even some women who were heavy drinkers did not have children with FAS.
But if FAS was a possibility, someone would have already talked to OP about this. It has distinctive features.

So much wrong with this post. FAS is not something you should be going round suggesting people’s kids have without evidence . You have no idea if OP drank in pregnancy and it’s hugely judgemental to presume she might have done.

Also ‘global delay’ isn’t really a diagnosis. It’s a label some young children get but should ideally be replaced with a diagnosis of mild, moderate, severe or profound learning difficulties before a child starts school and certainly before they hit their teens or even adulthood when the word ‘delay’ becomes completely meaningless.

please be careful diagnosing strangers in the internet when you clearly don’t have the knowledge to back it up.

FFS.

I'm going to end up with a bruise from hitting my head on my desk.

Maybe try setting up a PECs book for him. Pictures of his favourite food that he can choose from, favourite TV shows etc. some of his behaviour could be down to frustration he wants to be able to communicate but is finding it very hard. He sounds very similar to lots of the SEN children I work with at school. Once he starts a school they should put in place a PECs book, and if he do the same at home that would really help with his communication.

no advice but just wanted to say you sound like an amazing mother and a really kind person and your son is lucky to have you🩷 i hope you get some answers soon but with someone like you in his corner im sure he’ll have the happy life you want for him :)

I can see where your coming from
But I think I would be lead by SALT therapists and theycan advise which method suits a child better there are different methods of communication and some suit some children better
Before my son started using PECS ,they used TOBI images which are true object by image so photos of a glass's, plate etc.

I just wanted to say what an amazing mum you are, and also to thank all the people that have made helpful comments. I have a darling little three year old nephew who is non verbal, and I'm thinking that my sis in-law may pick up some useful tips from all the suggestions on this post. Good luck to all of you that have children that are 'wired' a little differently, special, amazing ... but hard work!

I haven't read the thread but I'm really sorry you are having such a stressful time, you sound like and amazing, understanding mum. One idea you could use to help with communication is to make your own picture cards. Take photos of foods for example so he can show you the card for the food he wants. Could do this with lots of things - TV shows he might want to watch, places he wants to visit, people he wants to see.