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.

No advice, but it sounds hard work so you have my sympathies.

You mention the wide set eyes etc., does the paediatrician suspect Down's Syndrome? Have they looked at his palms?

@VeterinaryCareAssistant Thank you I appreciate it.

She didn’t mention Down syndrome - what do palms show? Sorry I’m not clued up on it.

This sounds very tough, OP, I'm sorry.

Can he learn some signs to help him communicate and so lessen the frustration?

It sounds really tough. Often there is nothing more to be diagnosed than severe developmental delay and the behaviour you describe sounds like an expression of frustration. A way of communicating how he is feeling. Is there something you feel that would happen with an additional diagnosis? Autism and learning disabilities are not physical illnesses so they can't be treated. People with Down Syndrome can experience more health complications but treating the health issues won't change their learning disability. You sound like a very lovely mum doing her very best.

It could be that he is on the more severe end of the autism spectrum or it could be something else instead of or as well as.

Genetic testing will probably only find a very rare anomaly and probably won't tell you an awful lot about his condition - but he almost certainly does have some sort of Genetic condition which is causing his autism/global delay....and all the things you have described. You can't compare him to other 4yr olds

There is a small chance they will find a more common anomaly which may shed some light on possible treatments but more likely other things they need to look out for. It's worth doing but don't bank on it for answers.

I think wide set eyes a can also be related to foetal alcohol syndrome but that really does only happen with heavy drinkers

Hi OP. I have two sons that sound like yours. There’s a brilliant book called Autistic Logistics by Kate C Wilde that really helped me with my son’s aggressive behaviour. He’s really gentle now. This is what a previous poster is referring to but they may feel your son has chromosomal issues too. Lots of chromosomal issues do present as autism.

It sounds like you’re doing a great job in very hard circumstances, your son is so lucky to have you. Having someone sing his praises so openly and love him unconditionally is a wonderful thing.

The poo spreading sounds like sensory seeking, sensory issues are common with autism so might be worth looking if that makes sense for this, you might be able to help him find better outlets for his sensory needs.

Have you tried other communication methods that don’t involve him speaking, like using sign (makaton and sign supported speech are helpful tools) or picture cards he could use to tell you what he needs?

Definitely ask the doctor to refer for genetic testing. Have you been able to access any support for parents of autistic children?

This must be so hard for you all, yet your love for him shines through your post.

I would try to get as much support in place as you possibly can now. Thus means being noisy and persistent.

Contact your local children's centre and they will put you in contact with relevant agencies such as early years inclusion or portage. Try a parenting course like Incredible Years. Look for charities like children's mencap and autism society in your area. Meet other families in similar situations. Get in touch with social care... Call in family and friends to support with breaks for you. Make sure you have some time for you to look after yourself.

I would ask about the genetic testing again, but it might only lead to a label (like a particular genetic mutation or deletion) for what you are already seeing... it won't change his needs. It might give you access to more support (through a charity specific to the condition if there is one).

@autismmumx have you had a look at the Nemechek protocol at all? It’s essentially a daily dose of three dietary supplements which are all things that are excellent for human health anyway (inulin, extra virgin olive oil and DHA). It’s not a miracle cure or anything but my DS (HFA but had terrible violent / explosive meltdowns) has come on leaps and bounds with the supplements. It could be no harm to have a go? There are a few helpful fb groups too, I know one of the main benefits is said to be speech improving.

Hi OP.

What you describe is consistent with autism and developmental delay.

Often when children are diagnosed with autism early portage is offered to help support them.

This is a specialist support service for preschool children with learning disabilities. Have you been offered this?

www.mencap.org.uk/advice-and-support/children-and-young-people/portage

Early speech and language input will also help. If he is non verbal there are a number of possibilities for communication - a common one that is taught is PECS - picture exchange and communication.

pecs-unitedkingdom.com/pecs/

Makaton is also a possibility - this is a version of sign language.

Came to suggest PECS, I've seen it work wonders for nonspeaking children.

He needs a way to communicate asap. Take photos of his main items, parts of routine eg bath, bed, shoes etc and favourite food. Show them to him when he is doing/eating something or you want him to do something to start making connections.
When he plays with something, copy him. Even if it's banging the table or spinning something, copy it so you are entering his world, not trying to get him into yours.
Find sensory things he likes, Eg bouncing or spinning, light up toys.
Sing to him, he may like music and rhymes more than spoken language.
Put a large babygrow under his clothes to reduce smearing. Engage him in different smearing experiences such as cornflour (ooblek).

Is his speech and language therapy specified on his EHCP?
Is there Occupational therapy support specified too?

My DC has single palmar crease on both hands too, huge blue wide set eyes, epicanthal folds, v large head, little button nose. I'm certain he has something chromosomal going on but I can't get anybody to listen to me about it. He's nearly ten now and I just want answers for him so badly.

He has multiple diagnoses: autism, SPD, ARFID, global delay, and I accept these completely but nobody seems to listen to me about the physical stuff.

Autism is quite a broad condition and lots of children with genetic or chromosomal conditions are diagnosed with it and/or adhd.

There are lots of things which are markers for genetic abnormality.

• wide set eyes
• head size (being v large or v small)
• head shape (particularly having a protruding forehead)
• kidney issues
• low set, slightly rotated ears
• pre auricular sinuses

Checking for genetic issues can be helpful. It may not change your DCs needs but may flag things to expect in future or help you take actions to reduce other health risks they may be predisposed to.

It can also help you find a community of others with similar needs which many people find helpful/supportive.

It can also speed up access to some treatments because the diagnosis comes with an expectation of known health risks or issues and reduces the need to separately diagnose different issues.

Just wanted to say, my son is autistic and sounds very like your son.

My son was non verbal until he was 4ish. He also had extremely violent meltdowns in which he would actively seek us out to hurt us. He was diagnosed with a learning delay also. But I just wanted to say that my son is nearly 9, talks non stop now, he has recently become independent with toileting (still needs some help at times) and the meltdowns, while still quite violent, have become fewer and further between. He still can’t read or write but is getting there very slowly.

when my son was 4, I couldn’t imagine things ever getting better. It really upset me and it was almost a mourning for a ‘normal’ life - being able to go out for meals etc. but definitely now he’s older, things are a bit easier. It took a lot of adjusting to though.

Sounds like autism and cognitive impairment/developmental delay to me. There is a wide range and by the sound of it, your DS is severely affected. One of mine has ASD and learning difficulties. We had genetic testing which identified an underlying genetic cause. But if doesn't make any difference as there is no treatment in any case.

No advice I'm so sorry, I just wanted to tell you that the love you have for your son really shines through your words, what a wonderful mother you are 💖

I was going to suggest something like SCERTS but sounds as if PECS might be better.

I really feel for you and wish you had better support. You might find it helps when he starts school.

I really feel for you, no experience but am sending moral support and acknowledging your struggles. It must be so tough.

One a wider note there are so many similar cases now I feel the government will have to do something, and soon. Children with the same profile as your son’s seem to be so common now.

I want to say that you are not alone and there are many other families with children similar to your little boy. My son sounds very similar to your little boy. He is 7 now but still very much like a baby, he even cries like a baby when upset and when he walks he toddles a bit like a very big toddler! He was non verbal at age 4 however now he says loads of individual words and some 3-4 word sentences. He’s come on loads and I am so proud of him every day. He used to lead us to what he wanted and get very frustrated and sometimes aggressive (biting etc) when we didn’t understand what it was that he wanted. He has grown into such a happy, gentle little boy who repeats words and phrases all the time. We will never be able to have a conventional conversation with him. He speaks to convey his needs and not to socialise. It is painful to compare child with additional needs to other children their age who are advanced compared to our children, however I celebrate every new word spoken, every little milestone. However seemingly small. My son is an absolute joy and such a pure soul. He really is adored by everyone he meets ❤️

Global Developmental Delay can cause huge delays and being severely affected by autism.

A book that is brilliant is called More than Words - a parents guide to building interaction for children on the autistic spectrum.

It’s a great book and my son has learned to say lots of phrases through this.

Have you applied for DLA for your son? Care rate and mobility?

Carers assessment-have you had one? Please contact your local authority or carers centre for advice on how to get one. You will then be allocated a disability social worker for your son who will do a carers assessment to work out a respite package.

Potty training - for children on the autistic spectrum this can take a long time, it’s possible he isn’t ready yet but definitely worth persevering. Your child disability team can refer you to a toilet training workshop. You are also able to apply for funding for free nappies from the incontinence team.

Once your son is settled in full time school and one that is right for him it will be a huge weight off your mind and you will be able to have a bit of a break when he’s in school.

Speech - keep your speech very simple, if you give him a bottle of milk - repeat the word MILK over and over - hold the bottle away from him to encourage him to say the word or even just the M sound. When about to leave the house say CAR, show him a picture of your car and say READY STEADY GO! Encourage him to say GO and always leave a gap for him to say a certain word or sound. It is all about repetition, repetition, repetition! Try teaching him just 5 simple words like BED, BATH, CAR, MILK and whatever his favourite food is. Good luck! You can do it and he will surprise you in what he is capable of ❤️❤️

I would second "more than words". If you can try to get on a course as it changed everything for us. We also met parents in a similar boat. My little boy was 3 when diagnosed with autism, verbal but just single words and very few with no real communication just labelling, still in nappies and smearing. He is at nearly 12 amazing and doing well in main stream. Talks a storm (albeit not very great at communication as such just more a stream of consciousness about roblox etc) and we have a happy life and the deep love that I had for him back then has only grown, he is an absolute joy. I don't know how it will go for you but wish you all the best.

I can’t offer words of wisdom but can say that a friend of mine had a son with autism, severe developmental delay and some brain damage from being very premature. He is still tube fed as a young adult.

He was non verbal, didn’t walk (physically could but wouldn’t) and didn’t swallow food. He wasn’t expected to improve but once he was at school he learnt to walk and run, did start to swallow and more importantly he learnt to talk. First through makatron and then words. He doesn’t have adult speech but he can be understood by anyone now. The school were amazing.

I don’t think it helps practically to know what is wrong but it may help you as a family to process it.

There’s every chance of significant improvement but your timescales are likely to be very long. Good luck, you sound very supportive of your lovely boy.