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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:
Underhisi · 26/11/2020 09:37

All children with autism progress but for some it will be very very slow. To make sure that there is provision for those children as they get older and become adults, we need to acknowledge that.

HmmSureJan · 26/11/2020 09:43

@MissBaskinIfYoureNasty

Horrendous thread. Truly awful to read as a parent of an autistic child and I can't imagine how an autistic person will feel reading this. Absolutely hysterical too.
It simply isn't. YOU are the problem on this thread and tbh if you have a problem with a frightened mother who has NO experience of autism, thinks her child might have it and can't sleep, posting about her concerns then it is YOU who has the problem.

I'm sick to the back teeth of people being shamed and attacked on line when they're at their lowest because they didn't know something or didn't get the terminology right or have no experience of a really complex situation that they might now have to address in their lives. Most parents are terrified at first because they don't understand and have little or no experience of how to negotiate this new massive challenge.

This is how I know MN is a different place these days. I know I posted similar to this 15 years ago and I know others have too and never been told how horrendous it was to do so. Go to the SN boards OP, they saved me when I was frightened and felt alone.

Ahorsecalledseptember · 26/11/2020 09:44

I think a lot of people do want to be helpful and supportive but at the same time it does come as a surprise to me that so many people, some of them with ASD themselves or parents of children with ASD, fail to understand that autism is, in fact, a spectrum. What upsets your child won't upset someone else’s and vice versa.

my relative will calmly stand next to a booming speaker thumping out music at teeth shattering levels during a festival and love it, but then will freak out over slightly tight trousers. I’m sure we can all think of similar examples where we recognise people aren’t ‘textbook.’ In other words, autism isn't flu; the symptoms aren't textbook and completely the same for everyone.

Someone with high functioning autism might appear ‘fine’ but the reality is that unless you live with them or are very close to them you cannot know.

dontdisturbmenow · 26/11/2020 09:52

Are our feelings not valid too?
Yes but not in this thread.

Those thoughts go through much parents mind when pregnant. I'd work with children with Autism before and yes, the prospect of a child with the condition frightened me.

It was nothing to do with wanting a perfect child. I didn't feel the same at all with the prospect of a child with a physical disability. It's just that communication is at the essence of the way I function and saw myself bringing up my kids and the idea of being limited in that regard was scary.

Saying that, of course I would educated myself further more and adapted my life, but that the second stage of the process, and OP is still at the initial stage.

It's easy to judge when you've much further down the line.

20shadesofgreen · 26/11/2020 10:00

Hi OP I haven’t read the full thread but I have been where you are now and I know it is so hard.

In my case over the space of a holiday I went from having zero clue to the fact my child had ASD to just knowing he did. Like your current situation there were clues there might be autism but it was like a switch had clicked in my mind and I was out of denial. This may or may not be the case for your son but it is worth facing up to the fact your instincts are telling you there are concerns and taking it from there. If he doesn’t have ASD this process will not harm him and it might pick up other concerns if they exist.

5 months after we returned from our holiday my son was diagnosed with ASD under the public health system where I am. That was 6 years ago and after a scary first year of digesting it all and taking it all in, we have now reached a good place and autism is back to being just a part of our amazing little boy. Your son is always going to be the boy you love and care for and if it turns out he does have autism, it will bring its own challenges, but you will still be a parent to the little boy you love.

SionnachRua · 26/11/2020 10:29

@MissBaskinIfYoureNasty

Horrendous thread. Truly awful to read as a parent of an autistic child and I can't imagine how an autistic person will feel reading this. Absolutely hysterical too.
Way to merail the thread, well done you.
PaddyF0dder · 26/11/2020 10:33

Just wanted to say that autism is not something to be terrified of.

I’m not saying your son has autism, or not. I don’t know.

But my son, now 6, does. And trust me when I say that the worst part of it was the ore-diagnosis phase. The dawning concern, the to-and-fro in my head. It was awful. It robbed me of some of the joy, of how much I love him.

Autism isn’t some terrible disaster. It’s... fine. It’s just a different way of being. Life goes on.

dairyfairies · 26/11/2020 10:35

Haven't read all the replies but my advice is: sideline the HV, see the GP. Make a list of concerns and give GP a copy. Take the M-chat results with you and request referral to developmental paed.
Self refer to Salt.
And request a referral for a hearing test. They like to rule out hearing problems when a child does not talk and that is am easy one to establish via audiology.

Btw, I have a child with severe ASD and learning difficulties. I am not going to lie, it's not always easy but she is my live and I would not change the world for her. Different, not less.

x2boys · 26/11/2020 10:38

It isn't just a different way of being for my son ,it's a very real disability ,he's severely impacted by it and will need 24 hour care for the rest of his life ,he's still very much loved ,but it affects us massively as a family.

dairyfairies · 26/11/2020 10:39

Honestly I feel like I'm grieving for the future I thought we were going to have.

I went through the same between convincing myself it is ASD and the actual diagnosis. It was very much a grieving process but even if it is ASD, you will come out of it.

I found the this time (between being worried about ASD and a diagnosis) the hardest bit. It does get better!

dontdisturbmenow · 26/11/2020 10:40

*Autism isn’t some terrible disaster. It’s... fine. It’s just a different way of being. Life goes on"
Which for a single mum or two, who might have envisioned to go back or start a career, might be a much scarier prospect than a mum in a secure relationship already a sahm for example.

dairyfairies · 26/11/2020 10:42

Autism isn’t some terrible disaster. It’s... fine. It’s just a different way of being.

I think this is incredibly dismissive given how profoundly disabling ASD can be for some. My child will need lifelong 24/7 care too and it's not just a bit of s different way to go about with your life. It massively impacts on some individuals and also their families.

premiumhob · 26/11/2020 10:45

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PaddyF0dder · 26/11/2020 10:48

@premiumhob

I was trying to offer reassurance.

But sure, fire on with the personal abuse. Good luck and have a nice day.

vickibee · 26/11/2020 10:49

We have been through a similar thing Op and it is really hard, you know in your gut when something is not quite right. My DS didn't really speak until nearly 5. We sought help and I was told he was high spirited. We finally got a Dx at nine. (HF ASD)
He is 13 now and has had a lot of support but he really is a fine youngster, it just makes life harder because you have to plan everything to the nth degree. A lot of situations the NT kids take in their stride are incredibly difficult for ASD children, including making friends. I always tell him he isn't disabled he is just different and that makes him fell Ok about it, he has come to terms with it
You need to raise your concerns with the HV or GP

goldenharvest · 26/11/2020 10:51

He honestly doesn't sound as though he has obvious ASD signs, but if you are worried talk to the HV earlier, but you do need to speak to your GP about your anxiety, which I see is more the issue here than your DS

Duggeehugs82 · 26/11/2020 10:59

@dairyfairies

Autism isn’t some terrible disaster. It’s... fine. It’s just a different way of being.

I think this is incredibly dismissive given how profoundly disabling ASD can be for some. My child will need lifelong 24/7 care too and it's not just a bit of s different way to go about with your life. It massively impacts on some individuals and also their families.

This 100%
WartyWorry · 26/11/2020 10:59

@dairyfairies

Autism isn’t some terrible disaster. It’s... fine. It’s just a different way of being.

I think this is incredibly dismissive given how profoundly disabling ASD can be for some. My child will need lifelong 24/7 care too and it's not just a bit of s different way to go about with your life. It massively impacts on some individuals and also their families.

^^ This. 100%.

Some people with ASD are hugely disabled by it and will never be able to live independently or even speak. I don't know why it's so distressing and 'horrific' to acknowledge this?

For all pp with autistic children doing well at school, best friends etc, I'm am truly happy that you can celebrate your children and enjoy them. Isn't that what we all want? Unfortunately that is not necessarily the experience of non verbal severely learning disabled ASD families, and it is dismissive and hurtful to deny their reality.

premiumhob · 26/11/2020 11:05

[quote PaddyF0dder]@premiumhob

I was trying to offer reassurance.

But sure, fire on with the personal abuse. Good luck and have a nice day.[/quote]

I'm not sure what exactly you think is reassuring about dismissing my entire life, I'm sorry for swearing at you but everything else in my post was completely valid. My life has been bloody hard because of autism. It's not fine. It was never fine. It probably never will be fine.

PaddyF0dder · 26/11/2020 11:11

@premiumhob

This might be difficult for you to understand, but my post wasn’t addressed at you.

peakygal · 26/11/2020 11:16

Oh OP its totally normal to feel how you are feeling. I have been there and there is times I still feel that way. DD 8 was diagnosed 4 weeks before her 3rd birthday. There was so many signs there but I was clueless to it all. I just believed she was a chill baby/toddler. We got told she'd probably never speak or attend mainstream school etc but she is doing great in school, never stops talking and is a great kid over all. Even though its 5 years I still get the "You can't tell anything is wrong" statement.. I no longer get offended by it. Don't be scared.. Hugs to you x

premiumhob · 26/11/2020 11:17

[quote PaddyF0dder]@premiumhob

This might be difficult for you to understand, but my post wasn’t addressed at you.[/quote]

How patronising Hmm

guiltynetter · 26/11/2020 12:08

Hi, I was in a similar place to you with my little boy from age around 19 months, he used to do so many odd things, spent a lot of the time having massive screaming tantrums that I couldn't stop, and didn't seem to understand much, I spent every day worrying that he had ASD or something else wrong with him. My health visitor came to visit me after I rang up one day asking for advice and I burst into tears. She was AMAZING. she brought some questionnaires for his age and when I filled them in I realised he wasn't as behind as I thought he was. She said she wasn't worried about him at all and I also sought advice for dealing with his tantrums and my anxiety about it all. it really reassured and helped me.

Fast forward 6 months and he's now 2 years 2 months and he is so much better. he points, says a few words, his understanding is great, and he's much happier, I think he was just a bit behind. So maybe try and give him time although I know its hard. I no longer spend all my time thinking 'there's something wrong with him' and it's much better. I also have a 6 year old who was a very early speaker so that didn't help!

Onceuponatimethen · 26/11/2020 14:35

@Luke2019 I have sent you a private message if you check your inbox

Branleuse · 26/11/2020 17:14

of course its a very real disability. Its a social communication problem.
Doesnt mean that its a bloody death sentence or you have to be overly negative when someone is beside themselves with worry.
One of my kids probably wont live fully independently, but despite having to have a lot of extra help at school and then going to a SEN school etc, I do think he might be able to live semi independently in supported housing, and hes doing voluntary work now and about to start a trainee scheme for young adults with additional needs.
My other kids are teens and doing ok in mainstream with support and whilst it hasnt been the easiest of parenting journeys, thats for sure, my children are fantastic funny clever little people and I think theres no reason why they wont have as good a quality of life as anyone.
With the right support, both for you and your child, things can go a lot better than you might think.