4yo autistic DS has the mental age of a 1yo and I’m scared

[scaredasdmum]

NC for this.

I’m so burnt out and worried about my little boy and his future. I’m worried that I’m a crap mum and it’s all my fault.

DS is 4, autistic, non-verbal, global developmental delay presenting with the mental age of about 18 months.

Let me start by saying he is SO loved. I absolutely adore him to pieces and he knows that. He is so warm and honestly the happiest little boy inside. And he is the most beautiful little boy I have ever seen. And I will do everything in my power to always protect him and be here for him.

But I worry about his delays and how delayed he actually is. I never want to compare but I see four year olds without additional needs and they’re conversing, drawing, answering questions, playing with others, etc. It makes me feel sad for my
child.

He does not have one single word. He makes lots of noises, laughs etc, but he can’t even point. He is so smart and has learned to communicate with us by leading us by the hand, we of course know him inside and out so we can communicate with him.

He helps us dress him and understands some things - ie: when we’re out and I say ‘hand’ he will immediately hold my hand, or if I hold my arms out and say ‘cuddle’ he will come to me. But that’s about it.

He is still in nappies. He still eats finger food or his spoon fed. He doesn’t play properly - it’s always one thing to the next or throwing things. He hits himself a lot which is hard to see and we do all we can and have been advised to do to support him but he’s strong. He has meltdowns badly. I don’t remember the last time we had a family meal. We don’t even get invited to family events because my family say it’s ’too much’ for him. He will scream and scream and scream. Trying to get him
off the floor in the supermarket because he’s having the ultimate meltdown is hard. And of course we always get stared at.

He doesn’t listen to ‘no’. I’m not sure he understands it. He will just laugh at me if I tell him off or try to explain why we don’t do this or that. Sometimes it’s humiliating for me.

He has now started attacking me but not in a horrible way. I think he just finds my hurt reaction funny and thinks it’s a game. He’s started pulling my hair so hard to the point I started crying and he still wouldn’t stop. He will come up and scratch and slap my face. The other day he picked up my phone and threw it at my face. He’s thrown things at my head that have left bruises. But we feel helpless.

He doesn’t understand social interactions or interacting with other children. We’re constantly excluded from parties and most things we do are led by him - I would rather he be happy and feel free than in any overwhelming situation just because that’s what ‘other parents’ would do. So if he’d rather go run in the field than go play in the play park that’s what we do.

I keep thinking about his future and what will happen.

What I love about my DS though is that he is bright and knows what he wants. No he can’t talk but for him to teach us how to communicate with him, how clever is that? I love how free he wants to be. He loves to run and to kick balls and he loves going to his SEN soft play sessions and trampoline parks. He is ALWAYS on the go. He is so loving and cuddly and gives me kisses all the time. My favourite thing is when he moves his face close to mine to show me that he loves me. I would love to know what goes on in his mind.

He goes to nursery two mornings a week and has a 1:1 who is amazing with him. He has been awarded his EHCP and a place at a SEN school for September. We have done Portage and have been on waiting list for speech & language for 2 years. Our health visitor isn’t very helpful. How can I put a helmet on my child to stop him hitting his head when anything on his head is sensory overload for him?

I cry most nights thinking maybe I’m just a crap parent and I haven’t done things right and maybe that’s why he doesn’t understand. I question whether he hates me every time he hurts me.

I’m a working mum running my own business and things have slipped because of burnout, keeping up with everything is so hard. My partner is amazing and is a stay at home dad which helps massively. So why do I still feel overwhelmed?

I had PND for a year and was not in any way myself. I felt so lost and depressed after birth. I sought help and got treatment but it was a good year of feeling how I did before I started to get better. I constantly ask myself if I could have caused all of this by not being the mum I longed to be in the first year?

I just want my son to have the same experiences and opportunities and compassion as other children get.

I don’t know what I want from this post. I’m crying most nights and have been feeling so down recently. Every day is spent worrying about DS. I’m struggling to speak about it to anyone because I’m just exhausted from the thoughts and don’t have it in me to get it out. Which is why I guess I’m writing here.

I don’t even expect responses. I really just want someone to read this and acknowledge it. I just need someone to hear me.

My ds was diagnosed at 3. At the time he was roughly at the stage of a one year old.
None verbal, limited play, in nappies , huge meltdowns.

I use to panic a lot about the future , would he need care his whole life. Would he always be violent. I had CBT therapy which helped me to manage my thoughts better.

Ds is 9 now, he started talking around 5, toilet trained at 6. He's in mainstream school but has a one to one all day. We have a fairly stringent routine and he has obsessions but on the whole he's pretty happy. Never violent. His school work is age related except for maths which is above and music, art, pe are below.

We don't know if he will need a Sen school at some point or if he will have a job/relationship. But given how far he's come in 6 years anything is possible. I'm so proud of him.

I can only empathise with your feelings, my DD is 10 now but your post took my right back to the meeting we had before primary school when I cried because she was still in nappies. I'm a secondary school teacher, and all I could think about was how she could have a future as a young adult. I know that every experience of SEND is different, but all I can say is that you are doing a wonderful job, and with developmental delay the best thing to do is take every day as it comes. Speech may come or it may not- but communication will come with time. Right now he is communicating the only way he can, but it will change, grow and evolve as he develops. My DD will likely never sit traditional exams or live completely independently, however, she will always be loved and can now express her own love, needs and wishes in a way that causes less distress to herself and others. She is starting a specialist SEND secondary school in September and I am so excited to see how she thrives. Your DS will thrive too, in his own way and powered by the love and care you give him. ❤

My autistic 12 year old DS has thrived since starting in specialist schools - he can read well, and may well do GCSEs in a couple of subjects.

Early intervention makes a massive massive difference developmentally.

FWIW huge hugs.

I also suffered with PND, and found it all very challenging. He would still have been autistic even if I had sailed through.

Life has been tough at times but conversely I think we are better parents because of it now - we've learned patience and adaptability and flexibility, a lot of peers with mainstream kids approaching teen years are now struggling more than we are in some ways.

You are absolutely an amazing mum, perfect for your child - but it is OK and to be expected to find it hard. It is hard. But it can absolutely get better and the right educational settings will be a massive massive support

@IncompleteSenten can I ask...did your son go to specialist or mainstream school?

My asd boy was still in nappies when starting special school. His first teacher was amazing and helped me get him out of them. He had high level of need, requiring one to one even in special school but he did great, ended up with 3 gcse and functional maths and English with a lot of support. It is so hard but school makes it so much better even just to give you some breathing space. Hang in there

Hi. Mainstream with full time 1:1

Op I could have written your post. The only thing different is my little boy doesn't hit himself. Everything else is us. He's 4 in 2 weeks. He doesn't sleep well I was up from 2am til 5am this morning and I'm in work at 9. I'm exhausted. I just wanted you to know you're not allowed and you sound like a fantastic mum x

Oh love, it’s heartbreaking to read your post. Having a child with a disability can be a grieving process for many parents, but they’re all supposed to celebrate the child they have and not be sad, which leads to isolation. All I will say is, it’s clear your child is loved, but you’re struggling and need professional help. Speak to your GP, they may be able to suggest counselling. Speak to your portage team - again they may be able to help. Find a support group either online or in real life. Is your Dc going to a mainstream or special school? I think you’ll find things a bit easier once they actually start school. https://www.instagram.com/widgitsoftware?igsh=Y3pscHRsYWF3bW81
have a look at this Instagram account - Widgits are a great way of communicating with children, and if your DC is taking your hand to show you want they want, they will respond very well to using symbols.

It will get better..eventually. 4 is still very young, a lot of people have these issues with their 4 year olds.
The routine of school should help a lot and its great you've managed to get him into a sen school straightaway (mine had to scrape through mainstream while we waited for a place)

In my experience I find " Uh-oh" more effective than the word "No" or saying a light "No, thank you"
The word no, said loud or angrily, seems to set my child off and all hell breaks loose.

I have two autistic children and both of them are emotionally very young with one of them also delayed in other ways.

It’s really hard and I do understand that. What helps a lot is getting the right support network in place. Your HV is rubbish, but what about other support? Family Support Worker? Occ/Play Therapist? Have you met with his school’s SENCO? I’m assuming he is starting school in September but you can still make contact to ask for additional support to help him be in the best possible position to start school.

My cousin was severely brain damaged at birth. Doctors said he would never be able to talk. When he was 4 he couldn't talk at all. He's now 34, he works in a cafe at a special centre for people with SEN needs. He has friends and is able to talk pretty well now. He sees me maybe once a year as I live abroad but whenever he sees my parents he asks about my little girl and remembers things she likes. His life is full and beautiful. My aunt and uncle fought all the way to make sure he got the support and opportunities he needed. You are doing amazing with your son, don't give up hope and keep believing in him as you do.

Your doing an incredible job. My son was non verbal until 7. Getting into a school with speech therapist and OT on site made a massive difference.

Don't give up hope.

Another boy at my sons school was also non verbal at 7 and just preformed a main role in the school play. You don't know what will happen

He sounds a LOT like my ds at that age, I was terrified of hoe the future would pan out......I still remember in one of his reports the psychology describing him as ' a blind man leading an infinite elephant ' and bawling. (( fast forward a few years and googling I still have no idea what the hell she was wobbling on about ))

He's an adult now and he's thriving. He's never going to be fully independent but he's adored by me and those who know him. I only wish I could go back and worry a lot less. It won't change anything.

Hi OP,

I didn’t want to read and run so just adding a post here. I am a Clinical Psychologist, I work in a specialist CAMHS service for children with neurodiversity and learning disability. The families I see are very similar to how you have described your family.

i can see a lot of people posting about their child who has ASD, and I hope that is helpful, but I can also see that you have mentioned a global developmental delay (which is otherwise known as learning disability) alongside the ASD. For you this means you have much more to think about with your son growing up and needing ongoing support into adulthood. One thing we always tell families is that whilst things may always be different to a ‘typically’ developing child, you will always see your child changing and developing over time, he will gain skills you never thought he would (although maybe university and driving may be things you need to take some time to accept might not happen depending on the severity of the GDD).

There is absolutely nothing you have done to cause this and it sounds like you are doing a wonderful job. In order to secure your SEN school place you must have already been an amazing advocate for your child.Once he is in his setting he will have school based SLT support and ongoing community health services - paediatrician, OT , physio as needed. So you are going to have it’s of helpful short over time. You will also hopefully get some additional financial and care support for people to take your child out in the community over time.

I can see you’ve written about some of the struggles. You’re right that your health visitor isn’t best placed to think about your child hitting his head, that is something you should be seeing a psychology service for (CAMHs). Your referral would absolutely be seen in my service if you were referred to us.

i would recommend you speak to your GP about a referral for psychological support to the appropriate CAMhs service (there are specific services for children who have additional needs, separated from ‘normal’ CAMhS) to think about your child. We work through the parents, so for example someone might think with you about your feelings about parenting, worries about the future and spent time planning and thinking about strategies to manage meltdowns and support your child to attend those activities that can be hard sometimes. Of course, the NHS can be tricky for appointments and I don’t know where you are based. I’m in London and we see families within 28 days, we have an open door policy and we don’t leave people sitting on waiting lists. Even if there are waiting lists people are offered interim support whilst they wait. Maybe you’ve heard you can’t get seen.. but it completely depends where you are based and what the presenting issue is. I’m certain there will be something for you wherever you live.

anyway, please feel free to PM me if you’d like any advice, it’s hard to navigate, especially before you’re ‘in’ and getting the right support from various services. Once it starts it becomes easier to get linked in with the right avenues of support.

good luck OP!

Hi OP. I hear you. It sounds very difficult at the moment.

My advice would be not to look too far into the future. Deal with the next problem only and take things one day at a time. It can be overwhelming otherwise. Maybe look for RL support groups for you as well as your DS if there's any available. My best support has always been from others who understand your feelings and can empathise without being overly gushy with sympathy, because they're in a similar boat. It does feel sometimes like you've been forced to join this exclusive club of SN parents whether you like it or not, but they have been the best support for me.

@Easypeasy12345 Really? Our camhs service won't see anyone with an asd diagnosis as any mental health issue are asd related and they are not specialists in asd. So asd kids are left with mainstream counselling services and charities to support them. I know this through working as a social worker and through friends who have referred there.

I assumed that was across the board.

I could have written this myself.

You're doing amazing. It's so, so hard isn't it.
I often find myself avoiding people and places and I have a cry when I see other children younger than my ds doing things my 4 yo can't do. But then I remember how clever he is teaching us how to communicate with him ect. Mine was in nursery 2 days with 1:1 was due to start school last September but I kept him back and he was placed in a specialist nurture provision basically a nursery it's a year provision 4-5 rather than starting school at reception equivalent and honestly the difference is amazing. That intensive work from a specialist provision is just so much and its always hard even when it's getting easier it still hard, the admin is hard, the burnout is hard, mainting relationships and socialising is hard but knowing you're his world and everything they are is because you have committed and advocated and fought and learnt about his little world will always top the sad feelings. I see alot that sen parents grieve the child they didn't get which I do kind of understand and its a lifetime if happiness but grief om not sure I agree but there's a lovely community on Instagram and that's what I see alot of that it's OK to grieve don't know if that will help you but you're amazing.

No advice or experience here OP, just massive sympathy. What an absolutely shit show of a hand you have been dealt in the parenting game of cards. Be kind to yourself, you didn't ask for this and are doing your very best.
Take heart from the other PP that there might be hope and that things can improve for you in the future with the right support. But please do't blame yourself for how things are now. Acknowledge that things are shit, and that's ok to admit.

@IncompleteSenten that's an amazing story. Please write the bloody essay, I'd love to hear how you got from that first connection to driving and university!

My DS sounds exactly like your DS. He’s 7 now. Last week, we spent a day at a theme park and I didn’t even need to hold his hand. He didn’t run off or melt down or attack me once. This morning he dropped his cup on the floor at breakfast and picked it up when I asked. The progress is small, but that doesn’t mean it’s not there. Better days will come!

You sound like a wonderful mum and your boy sounds glorious.

As others have said, all I can suggest is to try so very hard to take one day at a time and avoid any and all comparisons with other children.

To get a specialist place and an EHCP so early shows you are, and will continue to be, a fantastic advocate for your son.

@Autienotnaughtie

oh my goodness, that sounds absolutely awful. Generic CAMHS probably don’t if they don’t have the commissioning to provide that service- but there should be appropriate commissioned services who are specialists to refer to instead. Mine isn’t generic CAMHS, it’s a specialist service for people with neurodiversity or LD- we don’t see children without a diagnosis (unless we are assessing them). I have worked in other similar services across the uk.

Having said that due to our location we are particularly well resourced. We have a large team specifically for young people with ASD and or learning disability. We work closely with social care and other services and have clinics that assess for ASD / other nerodevelopmental presentations. We have support groups for families/ family therapy/group therapy/school based therapy/ direct child therapy/ parent behaviour support. Everything really depending on what is needed. We do of course have lots of referrals and a waiting list (or we wouldn’t have so much resource) but we do try to make sure everyone at least feels supported. If people do have to wait and things escalate they get seen quickly. It makes me feel so sad to hear that other services can’t provide the support people need. I knew it was bad in some places with less commissioning but I always thought that there was at least something.

I haven’t heard of people being turned away for neurodiversity without appropriate services commissioned alongside it, that’s an abomination.

SALT should be in F of the EHCP if it is required and therefore must be provided. Same for sensory OT.

@Easypeasy12345 CAMHS fobbing parents off with “we don’t see patients with an ASD dx” is sadly all too common. Parents can challenge it but everything is a fight. Where there is an EHCP provision can and should be in there anyway, but many have to appeal for this too.

I see ours isn't involved in diagnosis or support after.

Diagnosis is via hospital paediatrician and asd team at hospital. But as soon as child receives diagnosis they are signed off from that service. We have a team called acsets that support school. But no mh support for asd kids other than generic support and charities which is stretched.

Re: the hitting and hair pulling - my neurotypical DS did that when he was 18-24 months, including laughing in my face when I cried, and hitting me again to get the same reaction. He was also a biter at that age. It is horrible, but if your son is developmentally 18 months it isn’t necessarily unexpected behaviour, and hopefully he’ll grow out of it. It was fairly short-lived for us, thankfully.