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'd encourage you to explore genetic testing, there have been a lot of advances over recent years. It used to often be a hiding to nothing but sometimes now it can give you a diagnosis of a rare condition or genetic mutations. This can be useful in connecting you with other families in the same boat and in predicting how your child will develop. It can be a lengthy process and not everyone is a fan but do look into it and ask the question.

I would pay whatever it costs to have the genetic testing done.

Autism is a difference in the wiring of the brain and is a developmental delay disorder. Yes your son was born 4 years ago but areas of his brain are behind

You need to stop comparing him to other children the same age. He is not like them, so all you will bring yourself is sadness. Having an ehcp and a place in a special school means you are doing well. Have you let yourself greive for the life you expected?

For the violence, do you know what triggers it? Avoid all triggers if they are obvious. For now, make sure your hair is always tied up and even go for a scarf or bandana to protect it. There are courses you can go on to learn appropriate defence and restraint to stop him hurting you or others. Hopefully the language support will help with better communication and less frustrating.

You may find you feel more supported once he starts school. There will be experienced professionals interacting with him, and probably also you, five days a week in an environment that he can cope with and you might meet other parents in similar situations. Meeting others in the same boat can make it all feel a bit more normal.

You are likely going to need extra support around you. Parenting a child with high needs all the time is draining and anything that can take a bit of the strain helps you be a better parent.

Consider getting both a carer’s assessment for your needs, and a needs assessment for your child.

https://contact.org.uk/help-for-families/information-advice-services/social-care/carers-assessments/

https://contact.org.uk/help-for-families/information-advice-services/social-care/needs-assessments/

Also google your local authority and ‘Local Offer’. You should get a list of services that you may be able to access, which again may pick up some of the strain but may also put you in contact with other families in similar positions to yourself.

The quasi-grief at my child’s prospects and what our lives have become has never completely gone for me, but feeling that they are getting the correct support to progress, that we are able to go out and do things, even if we do different things or do them in a different way, and having enough time for myself makes life bearable, even enjoyable at times.

Hi OP,

I just wanted to say how amazing and kind you sound, and to send sympathy at what you are coping with.

I had developmental delay as a child and it was difficult. The positive thing that I can contribute is that developmental delay can mean that things develop late, but that they DO develop. I think it's important that people should realise that "late" doesn't mean "never".

For example my eyesight didn't develop right as a child and I had a very very hard time reading. When I was an adult and I was able to express what was wrong, I was finally able to access the proper treatment. I then got help and sorted my eyesight with excercises. Now I read so fast and can read for hours and hours with no tiredness, and no problems focussing.

It's possible for example, that your son has many things that he will be able to do just fine, once the baby parts of his brain have made it into the early childhood level of development.

From my own experience, I would say that a diagnosis does help as people are less afraid of a person who can give a clear explanation of why they are different. People are much happier with the idea that I am ASD than they were when I was just different. Especially my family, tbh.

I would echo what other posters have said about looking after yourself. I have had a hard life, tbh, and I have an ASD son to look after now, and it can be gruelling. If you can get help for yourself, and cut yourself a whole lot of slack then that is a good thing.

Good luck

My son is exactly the same. He is 5 and we are always told it's just autism. I suspect he will be diagnosed with adhd and potentially a learning difficulty. It's hard I don't know what to say.... I have to distance myself from friends with typical kids and it's just too difficult for me really. It's masochist to be with them...

Op my son is exactly how you describe- he is 8 now and tbh has not improved but i know a lot of children at his SEN school who have.In his case it is a chromosome problem and is genetic so do get that checked. It's going to be very hard and tbh once he goes to school most therapies will be done there and you won't be involved that much ( at least in my school). There is help available- carers, family fund. You will adjust

I'm so sorry OP, this sounds so tough. Your DS sounds very similar to mine who is also starting school at an asn base. He doesn't talk either, is not toilet trained (has major bowel issues) and only eats a very limited diet. He was born early too and didn't actually walk until aged 2. He is very innocent and young in mind yet is the sweetest little boy and so cuddly and smiley.

It keeps me going, hard though sending hugs no advice sorry just solidarity and understanding x💐

I came on to suggest PECS too. For a child who cannot cope with the symbols, photographs of the choices might be easier. It might ease his frustration if he feels he has some control over his life. Just a laminated photo of juice or water in a cup or bottle plus another of milk so he can choose which he’d prefer. Photos of favourite snacks, crisps, biscuits, fruit etc so he can choose his preference. It worked a treat with my DS, who was higher functioning tbh and could cope with the symbols but was non verbal until 4yo.

Bless you, it’s very hard. 🫂 Try not to compare with those his age. Best to try to notice his own small developmental improvements against a few months ago etc.

It could be autism with nothing else. There is so much publicity these days about people with autism who are verbal and can work, that children like your son seem to be forgotten. So yes this is what autism can look like.
But since the paediatrician mentioned about genetic testing I would ask to be referred for this. If there is anything else it may be helpful to know.

Also very basic macaton can help communication. When I worked with disabled children virtually every child could sign biscuit and juice even if they could not do any other sign. You simply do the sign when you give him a biscuit or juice, or relevant sign for anything else he has frequently. It can take a long time, but most end up picking it up. Obviously depends on his levels of understanding though.

I would look at programs like the 100,000 Genomes Project, see if you can get testing done. Yes he could be autistic but he could be autistic with a rare conditions too.

You sound like such a lovely mother, you really are doing your best so please believe that when you are told.

My son is 7, he has ASD level 3 they call it and sounds very much like your son.
He is non verbal and also has some brain damage due to a stroke in utero.
He has a global developmental delay and is working between the ages of 0-3yrs old.

Other people have posted really good advice so I won't repeat them.
However day to day things that have helped my son with his frustration are;

Routine, We have the same routine every morning for school, same routine for meals and bed, bath time.
Children like this really thrive on routine and they learn routines very quickly, they are so smart in different ways.

Food cupboard! Our son has a restricted diet so we have his foods in one cupboard, (even has his name on it) with his items inside as well as safe plates/bowls and spoons so he doesn't have to rip the kitchen apart looking for something he wants.
Same with the fridge and freezer, all his items are kept in the same spot there so he knows where to lead us for what he wants.

Things like shoes, coat, nappy, wipes, all kept in one place so he can bring them to us and show he wants to go outside ( shoes coat ) or that he needs a nappy change.

Our son knows the PECS but prefers the communication boards they use at school.
We also have a key ring with pictures of his favourite things and shows on that he can recognise and help to communicate with us.

Using a now and then board can help them prepare for transition periods or them getting used to a new routine, developing some patience so those are good to look up.

Finding out if your son is sensory seaking or the opposite is good to help you develop suitable coping mechanisms for calming and soothing when he gets upset.
My son loves vestibular movement, shining, swaying and spinning to help calm him down, he hates cuddles being initiated by anyone else, if he has a meltdown in public it can look like im being horrid by not giving comfort to him but I have to wait for his cues or it will make him worse and overwhelm him.
Others like pressure from weighted blankets or vests, sometimes head banging can be seeking sensory seeking and OT can get safety helmets to limit damage.

Make sure you claim DLA, I didn't for the first 5 years but it does help.

Sent you a PM

Hi OP, I’ve worked with many children with autism who sound exactly like you describe your son. It sounds like he is just at that end of the spectrum. Where are you based because services can differ depending on where you live. It’s great you’ve got him a special school place - the children ive worked with have all made excellent progress in theirs!!

Hello! You sound like you're such a lovely mum. Spreading poo and hair pulling sound like sensory seeking behaviours to me. Why not try increasing his 'sensory diet', e.g. going swimming, more time outdoors, trampoline, roundabout (if he likes being dizzy), sandpit, grass cuttings, more time in the bath with lots of bubbles etc and see if that is enough to stop the poo smearing?

If your son has sensory issues there might be some useful information here:

https://www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf

have you read Hanens “More Than Words”? It’s what our NHS Salt uses - so many lightbulbs went off when we read it!

Oh my goodness, I’d forgotten about More than Words! Absolutely brilliant book.

https://www.winslowresources.com/more-than-words-from-hanen-book.html

Used to be cheapest from here, but check Amazon etc.

I’ve been going through a similar thing with my child although she does speak but very delayed. School have been great with 1to1 support and we are looking at special schools too. We’ve had to push for a paediatrician referral and she has several diagnosis but no medical intervention. SALT was a joke, they discharged her without even hearing her speak. My only advice is that you have to keep fighting and pushing for support when it comes to NHS. The system is broken sadly. It can make you feel so helpless as a parent and my mantra is ‘I’m doing everything I can do’. Good luck to you xx

Ask your GP for referral to genetics due to dysmorphic features. My son was finally diagnosed aged 13 with Koolen DeVries syndrome which is a rare chromosome disorder. We are now in touch with other families affected.

Hello @autismmumx I'm also another autism mum and wanted to send you a wee hug! 💐

Firstly, the poo, that's smearing and it's got tons of theories behind why autistic people smear, I feel with mine it was a Sensory need, they didn't cope well with a dirty nappy so that may have contributed.
Other theories I've read and been taught on courses are it's using poo as a self extension, which I'm not really sure about but I've heard that a few times and the other one I've dealt with as a care worker, not a mum thankfully, but has been they simply want their poo back, it belongs to them, they didn't choose to give it back and they don't want it to go. So they can get overwhelmed and they get it everywhere just trying to keep hold of it.
These are the most discussed reasons for smearing, but also, they're often more complicated reasons than a child trying to clean themselves and not having the motor skills to do so, that was the case with one of mine as opposed to a determination to put poo everywhere. The one with that determination would enjoy trying to stick it in the tiles like he was grouting them, I did try to do similar activities that didn't involve shit, but it just didn't do it for him.
We lost a few good paw patrol figures to the war on poo also, (sleep tight chase, you put up a good fight!)

Genetic testing is a nightmare to get, from the description you give could it be potentially fragile X syndrome? It's quite common but for some reason it's not always diagnosed because lots of doctors just don't bother with Genetic tests, autism as a diagnosis is so vast I imagine it seems pointless when being autistic lends it's self to a huge spectrum of ability and behaviour.

I used to work with "learning disabilities and challenging behaviour" as a job about 15 years ago now and in one home I worked at all of the residents there had autism yet not one had a diagnosis of autism at that point. Now it's pretty much the most common diagnosis people with a myriad of complex needs/disabilities receive even when autism isn't the most overriding of their struggles. It's such a bizarre time for autistic people, those who are high functioning but have had struggles for years and never understood why, are now learning they have autism, noticeably in women in their 30s-70s.

Because autism covers so much, from learning disabilities, mobility problems, poor motor skills, dyspraxia and issues with self harm and violent behaviour, I've noticed a lot of people being palmed off because it's "there autism", which is correct it is, but there are often other things at play like Genetic conditions which I believe diagnosing would help the individuals and their caregivers so much, because autism is so vast.
Just because there is high and low functioning it doesn't really help those who use wheelchairs or need handling belts for safety (my ds will need a wheelchair if he becomes more aggressive and determined to abscond when out in the community, currently he's in a large buggy) but its probably more useful to those who's autism presents more high functioning. So someone who does have the skills to explain they're having a meltdown and be excused for a bit.

I would definitely keep pushing for Genetic tests and I wish you all the luck in the future with you gorgeous wee lad x

OP I'm so sorry - it can be really hard being parents of ND children.

I can't comment on the various other conditions he may or may not have, there are certainly many. Some are combined with autism and some maybe present similarly - but at the end of the day labels are less relevant as long as you get the support you need.

DS has autism and ADHD. He was diagnosed with Aspergers but never really seemed a typical Aspie - apparently in our county the definitions depend on when a child starts to speak. All very random.

At 4 he was verbal (ish) but had some very challenging behaviours. Not as bad as you describe but still in nappies, and did the poo smearing, and had multiple meltdowns. We could go out for meals as a family but if he kicked off we had to leave.

There are so many levels of autism/other similar conditions. It's very hard to know what your child may be able to achieve over time, and every child is so different.

My DS managed to attend mainstream school, and is now 16 and an amazing boy! Yes, he has challenges, and clearly was less affected than your DS from the start - but there is still scope for lots of improvement. I know it is so difficult, and many parents like us have cried so much when times are hard, but I really hope things will improve for you, whatever diagnoses he may or may not get over time. , .