Terrified my 22mo has ASD

[Luke2019]

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.

Agree with PPs - even if he does have ASD it's not the end of the world. Most children present their parents with challenges of some sort as they grow up - that's par for the course. My DS has ASD but he's great fun, goes to mainstream school, and we all love each other to bits. Yes - he struggles a bit socially and academically, and yes - we sometimes argue at home because we're not always on the same wavelength - but that's families.

Try not to worry so much - and do seek help for that from your GP. It's up to you if you want to start other balls rolling before the 27 month test - but please don't panic. You're his Mum and you'll be great, whatever happens.

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

Waaahhhh Ive read some shit in my time, about autism and that takes the biscuit!

I find this thread hard to read too. ALL my children are neurodivergent, and to me, they are perfect.

I understand your concern OP but being blunt, you’re the one with the problem, not your child, regardless of whether he’s autistic or not.

Please have a little sensitivity and get to the doctors. Suppose he DOES have it? What do you actually think will happen? It’s a slightly different brain wiring, not a terminal disease.

My 5 year old has ASD. I have 3 children, all are completely different and have progressed and developed at their own pace. My 5year old was referred to audiology, SALT and then specialist children services for autism diagnosis. He has poor fine motor skills, is always moving, has hearing sensitivities and his speech was delayed. However, he has made massive improvements with communication and has a very impressive vocabulary (although others can find him difficult to understand). ASD doesn’t change the amazing person he is so please don’t stress about something you can’t change. Remember it’s a spectrum and although it can appear to be scary when you read snippets from google, i wouldn’t change my son for the world....I would also rather face his meltdowns than my hormonal teenage daughters moods

Stop being so fucking daft you've got no idea how he will turn out.

Seriously:
Dc could hardly talk at 22 months. Thought they going to fail the 50 words by 24 months. No, took off and smashed through the target.other DC didn't. Had slt. Reassessed age 7 ish and was well ahead of normal.

Eye contact. God knows. It is so over rated. I think dd's is better than mine. God knows what ds's is.

Mine are quite clever. One apparent from fairly early. One hides it and shocked everyone by coming second in class in maths test.

One works hard at school work, one won't engage.

My mates kid is autistic and less academic. Got more help though and is happy in a special school as opposed to unhappy and not catered for in mainstream.

Some are anxious autistic, some are angry. Many have difficulties socially but will adapt and find their niche.

As what to do.

Make a list. All the pointing not pointing stuff.

Add sensory. Yours seems to be sensory seeking for touch. What are they like with noise? Temperature? Light? Taste?

What about light touch?

How do they play with toys? Any lining up?
Imaginative play sounds a bit tricky.

Take the list to the GP and request an appointment with community paediatrician as you are concerned he has several early signs of autism as described by...

Mine waved a toy repetitively. Obsessed with windscreen wipers and opening and closing doors.
Also made noise in noisy environments as your own noise is less painful.

One of mine loved me singing one hates it even now. Do what makes them happy. Don't torture the poor lad if he doesn't like singing.

Mine had tepid bathwater. Warm was too painful. likes cold showers now. So they tell me.

Mine taught thmself to sign from Mr Tumble and signed at me. They both loved TV. One is addicted to the computer and phone, but so what. They are happy. The phone helps them regulate emotions and keeps them quietly occupied so I don't get sensory overload.

Everyone NT or neurodiverse has their own strengths and weaknesses and personality. Find what they are good at and help them with it. Support them to improve their difficulties. Enjoy them for who they are.

My dis was like that at that age, caught up with speech by 3 with no speech and language input.

He was diagnosed with autism when he was 7.

@Luke2019

Thank you :( I've convinced myself he has it. My family just don't see anything other than a laid back, happy little boy who enjoys doing his own thing

Sounds brilliant!

I think that's all any of us want!

There is a great new website from the BBC called tiny happy people - aimed at parents to help children with communication- full of good activities and advice. Agree with posters who say pursue referrals to audiology, SALT, and Paediatrician but main thing is to enjoy your time playing with your lovely child.

My 37 year old is autistic, diagnosed the day before his 18th birthday.

He said the one thing I did as a parent that helped more than anything else was letting him be who he is.

He is a father himself now, to my 2 year old granddaughter. His little girl is having an amazing time; he isn't bound by the constraints many parents are bound by - every day is an adventure for her, he's a great father, he's funny, loving, adventurous. His view of the world isn't typical but that's ok, why does it need to be?

Enjoy your son. Let him feel loved. He may never say he loves you, he may tell you 50 times a day. It doesn't matter what he says, does it? It's what he demonstrates.

@DrManhattan

Don't be terrified. Even if he has got it - so what. My autistic son is amazing.

This ^

I wouldn't have my son who has ASD any other way, because that's what makes him him.
It's been a privilege to encounter someone who I love whose brain works differently.

Appreciate though and have experienced that it can be hard.

@Luke2019

Honestly I feel like I'm grieving for the future I thought we were going to have. It sounds ridiculous because he hasn't even seen a professional yet but he has so many signs. I'm scared he will never talk and he will never tell me he loves me. I adore him so much

OP, my son tells me he loves me all the time.

Of course he also tells me he hates me quite frequently.

Actually, that's become recently "I love you Mummy, but I don't LIKE you at the moment". 😁

You'll both be fine x

Speak to your GP and calmly explain your concerns about what your son is/ isn't doing and ask for a referral. The waiting list is long so best to get on it now. What you have described with not pointing etc would be enough to be referred and early intervention is important, so don't be brushed off by your HV. However, the advice we have had from NHS is essentially that all help is really parent led, as guided by them. They will give you strategies and you implement them at home. Lots of the expensive interventions you have seen online are not available and that's often because they are unproven - there are lots of dodgy businesses out there, preying on desperate parents. The best advice I can give you, from a similar experience myself, is to get hold of the book "More Than Words". I was recommended this by NHS staff and it's essentially the strategies they will teach you to help your son, all contained in this book. It's pretty expensive (£45 I think) but the cheapest version is from publisher - think it's Winslow (way cheaper than Amazon). It's really user friendly and gives you strategies you can start now at home. Maybe you could borrow it from a library or get a cheaper version second hand. It will give you something to work with now. Don't panic about your son being really disabled. These things are a spectrum and even if he is autistic, many people are high functioning. Plus there are things you can do to help him. Don't panic - he is still a baby really and your worst case scenario is anxiety rather than reality.

OP, I'm going to be brutal here - you need to snap out of it. All of this hand-wringing and wailing isn't helping anyone, and it's totally unnecessary.

Not all autistic children are non-verbal. Not all autistic children have severe learning difficulties. And even those that do, it's not the end of the world.

Autistic children are perfectly capable of being really happy and leading fulfilling lives, just like any other child. Many autistic people have deep and intimate relationships with important people in their lives.

It's a massive insult to be determined to think this is a huge catastrophe. It really isn't.

I have 11yr old autistic twins, a DD and a DS. My DS was diagnosed around the age of 3, my DD was finally diagnosed this summer when she was 10. My DS has a number of fairly marked challenges but he's phenomenal at maths and you won't meet a kinder, happier or more loving child. He showers me with hugs, kisses and "I love you's". Constantly. I am very close to my DD too. I genuinely couldn't wish for lovelier DC. I'm blessed.

My DS attended a special school - my DD was in mainstream but needs extra support. So much help and support from my fellow parents, and the SEN school. We are a close knit community. Yes, there are battles, but that's no different than any child. Our battles are just a bit different.

There's a saying "when you've met one autistic child, you've met one autistic child". They are all different and unique - just the same way all children are different and unique. Don't try and squeeze them all into a stereotype you've heard.

From your description, it doesn't sound cut and dried that he is autistic. But you know your child, a mother's instinct is often right. I have to say though, there are lots of positive signs there that suggest even if your DS is on the spectrum, his challenges may not be as severe as you fear. For example, he's babbling.

The single best piece of advice I was given by a paediatrician was to learn to view the world through my child's eyes. Put aside your own preconceptions and expectations. Years ago, I was wailing about my DS sitting under a slide for 30 minutes on his own, just looking at the sunlight filtering through the holes while all of the other children at nursery played. I was distraught. The paediatrician told me to get over myself - was he happy doing that? she asked. Well, yes.... Then why are you upset? she asked me. She pointed out that this was about his happiness and I needed to learn about how he experienced the world and what things brought him joy. It was the wake-up call I needed to stop feeling sorry for myself and to put my DS front and centre. To forget about what he "should" be doing - that's actually not helpful for the parent of any child! I spent lots of time over the next few years on groups listening to autistic adults, learning about what my DS (and unknowingly, my DD) was feeling, seeing and experiencing. It's given me great insight and I'm certain it's contributed to our close bond now. I get him, and he knows I am his safe space.

By the way, my DS was pretty much non-verbal until he was 5. He doesn't stop talking now.

Your family see a happy, laidback boy. And that's wonderful. And it's what matters.

You've had loads of practical advice - definitely get referred to speech therapy now, don't wait. Early intervention is recommended if your child is autistic. Keep language simple, use lots of pictures or props to go alongside language you use. Be consistent, be patient. Allow him to develop at his own pace.

But most of all, please just relax about this. Our families who include autistic DC are not living this disastrous existence you seem to think.

@ExhaustedFlamingo

OP, I'm going to be brutal here - you need to snap out of it. All of this hand-wringing and wailing isn't helping anyone, and it's totally unnecessary.

Not all autistic children are non-verbal. Not all autistic children have severe learning difficulties. And even those that do, it's not the end of the world.

Autistic children are perfectly capable of being really happy and leading fulfilling lives, just like any other child. Many autistic people have deep and intimate relationships with important people in their lives.

It's a massive insult to be determined to think this is a huge catastrophe. It really isn't.

I have 11yr old autistic twins, a DD and a DS. My DS was diagnosed around the age of 3, my DD was finally diagnosed this summer when she was 10. My DS has a number of fairly marked challenges but he's phenomenal at maths and you won't meet a kinder, happier or more loving child. He showers me with hugs, kisses and "I love you's". Constantly. I am very close to my DD too. I genuinely couldn't wish for lovelier DC. I'm blessed.

My DS attended a special school - my DD was in mainstream but needs extra support. So much help and support from my fellow parents, and the SEN school. We are a close knit community. Yes, there are battles, but that's no different than any child. Our battles are just a bit different.

There's a saying "when you've met one autistic child, you've met one autistic child". They are all different and unique - just the same way all children are different and unique. Don't try and squeeze them all into a stereotype you've heard.

From your description, it doesn't sound cut and dried that he is autistic. But you know your child, a mother's instinct is often right. I have to say though, there are lots of positive signs there that suggest even if your DS is on the spectrum, his challenges may not be as severe as you fear. For example, he's babbling.

The single best piece of advice I was given by a paediatrician was to learn to view the world through my child's eyes. Put aside your own preconceptions and expectations. Years ago, I was wailing about my DS sitting under a slide for 30 minutes on his own, just looking at the sunlight filtering through the holes while all of the other children at nursery played. I was distraught. The paediatrician told me to get over myself - was he happy doing that? she asked. Well, yes.... Then why are you upset? she asked me. She pointed out that this was about his happiness and I needed to learn about how he experienced the world and what things brought him joy. It was the wake-up call I needed to stop feeling sorry for myself and to put my DS front and centre. To forget about what he "should" be doing - that's actually not helpful for the parent of any child! I spent lots of time over the next few years on groups listening to autistic adults, learning about what my DS (and unknowingly, my DD) was feeling, seeing and experiencing. It's given me great insight and I'm certain it's contributed to our close bond now. I get him, and he knows I am his safe space.

By the way, my DS was pretty much non-verbal until he was 5. He doesn't stop talking now.

Your family see a happy, laidback boy. And that's wonderful. And it's what matters.

You've had loads of practical advice - definitely get referred to speech therapy now, don't wait. Early intervention is recommended if your child is autistic. Keep language simple, use lots of pictures or props to go alongside language you use. Be consistent, be patient. Allow him to develop at his own pace.

But most of all, please just relax about this. Our families who include autistic DC are not living this disastrous existence you seem to think.

Wonderful post.

My son is 21 months and I started him on Gemiini systems, check it online and Facebook. It's online speech therapy with video modelling and you can apply for scholarship. The first week my son could say 'more' and show me with his fingers. It helped my 6yr old too when he was around 3, he is mild autistic, started talking at 3.

@TheMamaYo

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.

I find it ridiculous that everyone has to be so positive and enthusiastic about autism. Unfortunately, 'worst cases' do exist and probably more so than the average public realise. I don't think posts like yours are helpful to an op who has concerns about her child. She is allowed to share her fears and shouldn't be censored because it's hard for you to read FFS.

OP you've had lots of good advice. Fwiw I'm 10 months further on than you so completely understand where you are coming from. Definitely audiology first - check if you can self refer and also the same for speech therapy. It's a hard path, be kind to yourself

I have to agree wartywoo. Autism isn’t all sunshine & roses. Everything is such a battle, from getting the therapy the child needs to finding a suitable school place.

Please stop panicking!
The 2 year HV check is a brilliant place to start, you can discuss your concerns with them and they will make any referrals of they think they need to.
This is how the assessment process began for my 5 year old son.
I asked for the 2 year check to be with a person rather than a questionnaire. The health visitor came to the house and did a range of activities to assess.
She then left me with some activities to encourage interaction and following simple instructions,like putting a few things in and out of a box " mummy put the ball in the box" and then " you take it out" and so on. Or rolling a ball for them to get.
It was quite obvious that my son was nowhere near his milestones so he had a hearing test and then speech and language review before going on to the consultant.
His nursery were very supportive and really helped with the assesment process.
He is now in a special needs school and loves it.
He has gone from somebody with hardly any awareness of others at times to somebody picking up words, following simple instructions and joining in a range of activities.
My son is diagnosed with profound learning disabilities along side his autism, but that does not mean that he doesn't have any capacity to learn and progress.
Please dont lose sight of your lovely child and block yourself from enjoying him.
I guess all this waffle is trying to say is that whatever the outcome of any assessment your child may have, it doesnt change who they are.
You should seek help for anxiety and step away from google. 😊

"I'm scared he will never talk and he will never tell me he loves me. I adore him so much"

That describes my son but I know he loves me and I adore him.

I don’t have expertise in ASD but have worries myself senseless over another issue my child might have had.

Take a deep breath. You are going to be ok. Even if your worst fears are realised and he does, he is still your gorgeous boy and there is lots of help out there and many with ASD are thriving and have successful lives. It’s not a disaster. Stay calm and board this journey of what-ifs for now knowing you can cope

@TheMamaYo

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.

There's nothing wrong with this post. I should think almost every parent of an autistic child on MN might have written it at the beginning when they're scared and stressed.

OP I can't add much to the brilliant advice you've had but well remember the inability to sleep, the endless googling trying to find "proof" that he wasn't. That made it far worse and made me ill in the end. DS is a teenager now and just brilliant. Loving, loyal, caring, intelligent, funny, just brilliant. It's not been an easy ride, I won't say that but I have never regretted a minute of it. The one thing I would say to the parent of an autistic child is, if you don't step up for them then who will? I remember being sat in a meeting with education professionals as they all discussed my son and I was so nervous to speak up even though I thought they must be the experts but I knew a strategy they were discussing would make things worse. I felt sick with fear but I thought to myself "if I don't say it then who will?" and I have lived by that ever since with regards to him and his needs. I've needed it with family who were convinced he was fine and I was overreacting, with multiple schools etc. It's a tough road but you get used to it and I wouldn't change a thing.

@Bigbestsister

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

Waaahhhh Ive read some shit in my time, about autism and that takes the biscuit!

I find this thread hard to read too. ALL my children are neurodivergent, and to me, they are perfect.

I understand your concern OP but being blunt, you’re the one with the problem, not your child, regardless of whether he’s autistic or not.

Please have a little sensitivity and get to the doctors. Suppose he DOES have it? What do you actually think will happen? It’s a slightly different brain wiring, not a terminal disease.

I have to disagree, at 22 months was the age my daughter was beginning to show sighs and was diagnosed at 2 just before 3rd birthday , she is non verbal and on severe end. I absolutely went though all the emotions when she was 22 months. Mainly because of being a teacher and having children like my daughter in my class i knew straight away. No its not a terminal disease but its been incredibly hard being her carer and im not going to pretend it isnt . I wouldnt wish this life on anyone. Not that i dont love her less than her sister. We have to make best of life we have. Maybe the OP son doesnt effect him as much as it can, but lets not pretend for some families with autism its tough.

*I dont love her less than her sister of course

It’s not the end of the world
Mine were in special schools
They are doing ok
I knew at 6 months ,you adapt and get used to it ,and it’s just how it is

My son with asd will be doing his GCSEs next year and is a happy and quirky young man. He’s affectionate in his own way and has a very small but good groups of friends. He is very clever (although processes slowly so gets extra time and a promoter) and goes to a selective school where a number of his friends have asd too. He does have issues socially, also has ocd and gets anxious, but he has learned some strategies to help him.

I knew at 18 months but he wasn’t diagnosed until secondary school because he was ‘high functioning’. I was petrified at first but the diagnosis has been brilliant for him and helped him understand himself.
I do worry for the future with relationships etc as his communication is not good and he lacks empathy, but he is loving in his own way and a fabulous young man - I wouldn’t have him any other way!

Prompter not promoter 😂