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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Terrified my 22mo has ASD

301 replies

Luke2019 · 25/11/2020 20:33

Hi everyone. Writing this from a pretty low and desperate place. My precious DS is 22mo and I am thinking he may have Autism. Up until a week ago, I had no concerns whatsoever. Didn't really pay attention to the little things and just thought he was speech delayed, like most of the boys in my family were. He has recently started spinning in circles whilst looking out the corner of his eyes which at first, I found absolutely hilarious and adorable. I ended up Googling it and lots of scary things came up about Autism. When I looked in to Autism further, I realised my DS has lots of the early signs and he even got a high risk score on the MCHAT test. He doesn't point to share attention or even point at all, he doesn't bring me toys or engage me in his play and his eye contact isn't great either. Sometimes he looks at me when I call his name, sometimes not. He doesn't put his arms out to be held (although he definitely did this as a younger baby). Every now and then he sort of will if I go to pick him up myself. He has no words but did pretend cough the other day after I coughed (I did it twice to make sure, and he copied again). He does babble and make sounds "da da da" etc. He also still puts things in his mouth a lot and licks things, which I know can be normal at this age. Other things I've noticed are he jumps up and down when excited, again, I know this can be normal and sometimes laughs to himself. I honestly am driving myself crazy from analysing his every move. I must admit, in the past I've sort of just let him do his own thing and maybe not got down and played with him enough. He does also love the TV. 😳 In the past few days I've tried to get him to help me put the laundry in the machine to assess his understanding. I put a top in and said "DS do it" and he did pick something off the floor and put it in, but I don't know if that is just copying/him wanting to do it anyway rather than following instruction. I did the same with getting him to put bath toys in the bath which he did copy/do. He is very affectionate, always has been and loves cuddling. He is also happy, smiley and easy going. I've started reading to him and pointing to pictures in very simple terms for example "cat, flower" then turning the page. I also move his finger to the image as if making him point to try and teach him to. The same with playing with him, I will say, "Apple please", put the toy apple in his hand and guide his hand to mine, then make a big fuss of him (even though he isn't actually doing it himself). Does anyone have any more tips for me? I've terrified myself from Googling so much and am now convinced I am going to end up with a severely disabled son, in a special school and maybe even non verbal and aggressive towards me and I won't be able to control it as a single mum. :( I suffer badly with anxiety as you can probably tell. I'm only 28, on my own with 2 kids (DD is 6 and NT), on benefits and I can't afford all the therapies they talk about online. I've phoned my HV and she said to keep an eye on it but wait until his 27mo check. Should I be doing more? My family think I'm going insane and that there is absolutely nothing wrong with him, that he is just delayed like all the boys in our family. My DB and both of my nephews did not speak until they were 3. And my sister said my nephew was also not pointing or responding to his name until 2.5. Please help me. I'm not eating or sleeping. I love my DS so much but am looking at him feeling like maybe I don't even know him which is tearing me up inside. Sorry this is so long.

OP posts:
peasoup8 · 25/11/2020 22:15

OP he genuinely sounds fine to me. I agree with your family, it doesn’t sound like there’s anything wrong! Please stay calm and take care of yourself x

Luke2019 · 25/11/2020 22:17

Thank you. I was kissing his little feet this morning and he was giggling away. I just felt so sad at the thought of what if he doesn't progress much past this. I feel so awful even typing that

OP posts:
SionnachRua · 25/11/2020 22:23

I do understand the panic re: autism (I have a lot of issues around kids having autism due to trauma from an abusive autistic brother) but you are letting the anxiety do the driving right now. He's still your little boy no matter what. Seek professional advice on it but also take some time out for self care, get some sleep and enjoy him as he is.

Gunpowder · 25/11/2020 22:23

Have you had his hearing checked OP? When DS was a similar age I had similar concerns. My HV also said to wait for the 2-2.5 year check. I also had read lots about early intervention so I took him to see a private paediatrician who specialised in ASD/development. The two things she suggested were a hearing test (ask GP for an audiology referral) and speech therapy (we did this privately for a year as the NHS waiting list in our area was long).

It took lots of trips to audiology (toddlers are tricky to test) but DS has moderate hearing loss due to glue ear. He’s on the waiting list for grommets. Of course not being able to hear properly impacts speech. He did lots of funny head shaking as a younger toddler but I think in retrospect this was due to ear infections. He didn’t point or share things particularly at 20-22 months but I think that was because he couldn’t hear and so didn’t really know what was going on. He was completely in his own little world.

The speech therapist we saw was great. She encouraged us to do ‘special time’ which is 10 minutes every day where you play with your child completely uninterrupted in an otherwise quiet room. You let them lead the play, you get down so you are facing them and on their level (even if you are on your tummy), you look them in the eyes, you don’t ask questions (but you can name things for them or narrate what they are doing when they look at you), you repeat and praise any words or vocalisations they say, modelling the correct word. I’m sure there are more things I have forgotten. It’s surprisingly hard to do at first but I think it’s worth it.

DS is now 3 and I’m confident he is NT. I think he was taking his time and the hearing loss really held lots of things up, not just his language.

I’m telling you all this because there could be lots of reasons why your DS is not ticking all the boxes on the development quiz at the moment. There is no sense in rehearsing disaster and diagnosing your son with a condition he may not even have. You are a obviously a really good mum who wants the best for their child and I hope you get answers soon. Flowers

smartiecake · 25/11/2020 22:25

I have been where you are OP. My son was diagnosed at 3 and a half. I totally had that overwhelming grief for a long time. It is utterly heartbreaking and i understand the despair. Your son is still very young and at that age they change so quickly so keep doing what you have been doing, keep trying to interact with him and get him involved. He may have autism, he may not. Only time will tell but if he does then you have not caused this, and you can't change it. Even if he does have autism he will grow and develop and still be your wonderful little boy, dont lose sight of that. He still needs his mummy and all you can do is love him and make him feel loved and secure. Speak to your HV about your concerns and when he has his developmental check up and you still have concerns write them down to discuss them in case you get upset. And if he does go for assessment and diagnosis you will need support. Keep posting on here, i had lots of support from MN when we were going through assessment

Mammyloveswine · 25/11/2020 22:32

My little boy was 22 months old when I first raised concerns about his lack of talking... he's now almost 5 and is awaiting assessment for ASD...he is a chatterbox, sociable, loving, clever... he just needs a little extra support,

What I'm trying to say is please don't be terrified! Your lovely DS is still your DS. Trust in your instincts but don't panic!

Feel free to DM me.

Fr0thandBubble · 25/11/2020 22:32

OP your son sounds very like mine at the same age. He got diagnosed at 19 months (we went private) and we were told by Daphne Keene (one of the UK’s top paediatric neurologists) that she was 100% certain he had autism and that it was very significant.

He is now 8 and if you met him I doubt very much if you would be able to tell. He talks fluently, is in a mainstream school without any additional support and is somewhere in the middle of his class, belongs to a football team, has friends and is well-liked, and is very funny and engaging. He can act a little bit immature sometimes and is a bit “quirky” - might sometimes say something a bit odd or inappropriate - but that really is the extent of it.

Don’t listen to anyone on here who says you are overreacting because it is bloody terrifying and I felt exactly the same as you. In fact, I had a nervous breakdown. I was just desperate to know that he would one day be able to talk. It is the not knowing where on the spectrum they will be that is terrifying.

Sounds like you are doing all the right things - I would go to the library and borrow books play therapies for children with autism. There is a Hanen book called, I think, More Than Words, which is very good. It’s very expensive but the library will be able to buy it. You can also google techniques for helping them learn to talk and interact. Don’t worry about not being able to afford private therapies - you can pretty much do it yourself. It really boils down to intensive interaction.

Book an appointment with your GP and tell them you are not leaving until they give you a referral. Find out if there is Portage in your local authority. Find out if there is an early years centre in your local authority that you can get referred to. Be the squeaky wheel that gets oiled - don’t be fobbed off, you have to fight tooth and nail to get access to services and early intervention matters.

Please also go and see your doctor about getting some anti-depressants - ones that will help with your anxiety, like escitalopram. You cannot pour from an empty cup and you need to look after yourself so that you can help your son. I was suicidal before I took the antidepressants and they made me OK, when I thought it was impossible to feel anything other than absolute despair.

Feel free to message me - I’d like to help if I can. I’ve been where you are now and I know it is a very dark place.

Didiplanthis · 25/11/2020 22:32

You have had lots of great advice, but one thing stood out. You are worried he will never say 'I love you' . My DTs both have ASD. They are 8, academically able and VERY articulate, but struggle with emotional expression. They have never once said I love you, but their love pours out of ever bit of them, I am their rock and their everything. Yes they have meltdowns, yes they shout and scream at me, but never ever has there been any doubt they love me despite not having the words for it, or being able to truly say what that feeling is. Love REALLY doesn't need words. You sound amazing and loving and determined to do the right thing by your child. You will be ok.

TerribleCustomerCervix · 25/11/2020 22:38

@Luke2019

Thank you. I was kissing his little feet this morning and he was giggling away. I just felt so sad at the thought of what if he doesn't progress much past this. I feel so awful even typing that
He will though. He will grow and learn, he’ll surprise you and one day you’ll realise you tied yourself in knots for no reason.

I was like you a year ago when dd was 2. Now, she’s just turned 3 and I don’t worry anymore. She’s gone from being sort of in her own world to playing with her little brother, better eye contact, using words and phrases and even singing. She was playing with a cloth in the bath the other night, singing a song in her babble, and I realised she was singing Sing Sweet Nightingale from the Disney Cinderella- in tune! She has a fantastic memory, is a quick visual learner and as sly as a fox.

Even if your DS has to go to special school- so what? I was worried about the same thing when a friend’s nephew started a special primary school due to his asd. He’s come on so much since September- his communication skills have improved hugely and he’s making proper friends. There’s 5 adults in the classroom and 6 kids- that’s amazing. Going to a special school doesn’t mean they’re written off when they’re 5. I have a childhood friend who has autism and went to a special school- she now has a masters in history and works full time.

He’ll be ok.

Didiplanthis · 25/11/2020 22:39

And I agree with the PP, please see your GP for help with your anxiety, meds helped me cope . You can't change anything about your boy right now and you don't need to, but you can change how you feel and find the strength to advocate for him him but more importantly to see through your anxiety that your little boy is still the gorgeous little boy he always was, don't throw away the lovely bits of the present and the past for a future you can't predict or know.

TheMamaYo · 25/11/2020 22:58

I find this a bit hard to read. I think you're in serious need of adjusting your views on autism, whether your son gets diagnosed or not. This post is not very autism friendly.Confused

DillyDilly · 25/11/2020 23:06

Try reducing the amount of tv your DS watches, don’t have it on in the background even. Maybe don’t turn it on at all while he is awake.

And keep on talking to him, engaging him in helping you with chores, very simple instructions and lots of playing.

Fedupmum88 · 25/11/2020 23:07

Hugs to you op I’ve been there and it’s awful when that realisation hits you like a ton of bricks 😢

Try not to stress, I would certainly tell hv that you’re not happy to wait for the 2 year check to see if she will do it earlier.

In my area you can self refer to speech therapy so look in to that.

My ds (5) is still not verbal but his understanding has come along way. He goes to special school and loves it. I often worry about the future but I try to take each day as it comes.

TheDaydreamBelievers · 25/11/2020 23:09

@Luke2019 I understand you are worried but your anxiety is really playing into this. Even IF your son is diagnosed with ASD in future, the majority of people with ASD have speech and do not have a Learning Disability . Even if he did, you would cope. No matter what, he is the same wee boy - your son. You can and will cope with whatever being his mummy throws at you.

Embracelife · 25/11/2020 23:12

Try reducing the amount of tv your DS watches

Umm tv wont mskd him suristic.
My ds wirh asd leatned to read wstching ABC programmes on tv
And a child who can be entertained with tv..well it makes life easier

Dont stress about tv of course hVd him watch mr tumble not loose women..

Embracelife · 25/11/2020 23:12

Wont make him autistic

MadameBlobby · 25/11/2020 23:17

I agree, stop googling x

Speak to your HV. Your boy is very young still so don’t worry.

My boy is autistic as well and if I am honest thinking back to his toddlerhood the signs were always there.

At the end of the day he’ll be who he is and being scared of it won’t help or change anything. Just enjoy him just now and speak to your HV. Big hugs!!

DillyDilly · 25/11/2020 23:19

@embracelifre. I never said watching tv makes anyone autistic or even suggested that, did I??

BUT there are studies out there which find that too much tv/screen time can cause speech delays in babies/toddlers.

MadameBlobby · 25/11/2020 23:20

@DillyDilly

Try reducing the amount of tv your DS watches, don’t have it on in the background even. Maybe don’t turn it on at all while he is awake.

And keep on talking to him, engaging him in helping you with chores, very simple instructions and lots of playing.

I used to feel like shit about how long my son spent on screens until the occupational therapist told us that autistic children get a specific kind of sensory feedback from screens
Fr0thandBubble · 25/11/2020 23:23

To those of you saying this is no a very autism-friendly post or that they find it offensive because they are autistic, the very fact that you can post that means that you have high-functioning autism. What OP is scared of is that her son will be severely autistic and non-verbal. Let’s not pretend that having a severely autistic child is in any way easy, either for the child or the parent. OP has every right to be worried and upset, so stop trying to make her feel even worse than she already does. Her feelings are completely valid.

DillyDilly · 25/11/2020 23:27

@MadameBlobby but the OP’s child has not been diagnoised with autism or anything else nor even seen a health-care professional.

premiumhob · 25/11/2020 23:27

the very fact that you can post that means that you have high-functioning autism.

That's not how it works.

MadameBlobby · 25/11/2020 23:29

My youngest son copied everything his brother did. Absolutely everything. I still don’t know even now if it was an autism thing or just a second child thing!

I’ve also known people who have been worried about speech delay in second or subsequent kids and the kids were fine, they just couldn’t get a word in edgeways as the older sibling never stopped talking!

MadameBlobby · 25/11/2020 23:30

[quote DillyDilly]@MadameBlobby but the OP’s child has not been diagnoised with autism or anything else nor even seen a health-care professional.[/quote]
Oh no of course not, sorry.

Jemjems89 · 25/11/2020 23:30

Completely get where you're coming from, it sounds exactly like boy, he's 3.5 and we've just been referred for assessment but there's a years waiting list. We've only just had a SALT referral so I should start there and your GP can refer. I've been saying it since he was 18 months and kept getting dismissed by family, even my husband who all said he hasn't got it.

But he won't ever stop being your boy. And as my friend told me, it won't change who he is! It will just give him a label that will mean he can get access to more support that he may need in the future. That's all 🙂

We've also been using a speech therapist called Joanne Jones, she works online and runs The Can Do approach, she runs it within a group and will teach you techniques you can use with him. Honestly it's changed our lives so much and his eye contact had increased, and his communication is getting so much better.

We've also noticed a change in his behaviour with diet, I was reading about the nemecheck protocol (I take a lot of it with a pinch of salt but we thought we'd try it) and just cutting out sunflower oil and increasing his omega 3 intake has worked wonders and we've noticed he's more attentive and focused.

Hope that helps x