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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:
Wheresmykimchi · 01/12/2020 22:07

[quote WartyWorry]**@Wheresmykimchi* you didn't say 'its not a big deal," but you did say "No need to be depressed or heartbroken."* It certainly is a big deal for some people with ASD and their families and you telling them how to feel is dismissive, rude and patronising.[/quote]
I'm well schooled in ASD thanks.

I don't think there's any need to be depressed or heartbroken. I'm not being dismissive and I was FAR from the only poster to pick up on those words as being OTT but thanks for singling me out.

Wheresmykimchi · 01/12/2020 22:08

@dairyfairies

Don't put words in my mouth. I never said it wasn't a big deal.

that was not an answer to my question. I guess we can read a big 'no' between the lines. I think it is brilliant if it didn't have the devastating impact it had on your life but it doesn't give you the right to be so dismissive of how others feel.

Obviously it's a no, I assumed your questions were rhetorical and I did say I'm sorry for what you've gone through so don't tell me I'm dismissive. I'm not dismissive.

There is a massive spectrum between thinking it's no big deal and thinking that autism wrecks lives was a strong statement to make

Wheresmykimchi · 01/12/2020 22:10

@Duggeehugs82 I can't quote you but if you don't know what the phrase means I suggest you don't hand pick a sentence from my post and single me out to comment on it. Cheers.

Wheresmykimchi · 01/12/2020 22:16

@Duggeehugs82 I've just read your other response and realised why you're picking on me.

I didn't say you shouldn't be depressed, partly because I wasn't speaking to you. I did say the OP has no reason to be depressed about a situation that hasn't happened yet in the same manner that many many other posters have but you haven't commented on that

I didn't tell you you couldn't feel depressed or what to say to your counsellor because it wasn't about you. Why is it that posters who label all ASD children in the same category (which I disagree with by the way as I have quite a lot of knowledge and experience despite being the dismissive rude horror I am ) get slammed but it's OK for you to take offence to comments I made at OPs particular situation because your child was two months older when they were diagnosed Hmm

WartyWorry · 01/12/2020 22:17

@Wheresmykimchi if you are not depressed or heartbroken about having a severely autistic child that might never speak and be able to live an independent life then all power to you. It is dismissive to say that noone should feel that way, surely you can see that 🙄

Wheresmykimchi · 01/12/2020 22:20

[quote WartyWorry]**@Wheresmykimchi* if you are not depressed or heartbroken about having a severely autistic child that might never speak and be able to live an independent life then all power to you. It is* dismissive to say that noone should feel that way, surely you can see that 🙄[/quote]
I didn't say that. OP doesn't have a severely autistic child. At this stage she doesn't know. I said there is no reason to feel depressed or heartbroken yet. It was a supportive post.

Interestingly enough a poster actually said that OPs phrasing hurt them because they have an autistic child who is doing great (OP actually said that post made her feel better and you call me insensitive ) and several posters went on to rip the arse out of her for saying terrified but I see you managed to ignore all those posts and jump on mine.

Wheresmykimchi · 01/12/2020 22:22

[quote WartyWorry]**@Wheresmykimchi* if you are not depressed or heartbroken about having a severely autistic child that might never speak and be able to live an independent life then all power to you. It is* dismissive to say that noone should feel that way, surely you can see that 🙄[/quote]
Please stop saying all power to me. That's a ridiculous phrase. I don't want power over anyone and you know nothing about my life.

WartyWorry · 01/12/2020 22:22

@Wheresmykimchi I have just seen your latest post and think perhaps there have been crossed wires, for which I apologise. Clearly, this is an emotive subject.

What I and other posters object to is this idea that all people with ASD are just living a normal life with a 'different perspective'. It often feels that people are offended by talk of severely impacted individuals and their families to the point where you can only post about positives, and unfortunately for very severely impacted people there simply are very few.

Wheresmykimchi · 01/12/2020 22:24

[quote WartyWorry]@Wheresmykimchi I have just seen your latest post and think perhaps there have been crossed wires, for which I apologise. Clearly, this is an emotive subject.

What I and other posters object to is this idea that all people with ASD are just living a normal life with a 'different perspective'. It often feels that people are offended by talk of severely impacted individuals and their families to the point where you can only post about positives, and unfortunately for very severely impacted people there simply are very few.[/quote]
Nah I get you. It is emotive. Didn't appreciate the triple bandwagon of posters deciding I was the worst person going.

As per your second paragraph. I work in ASD. I don't think that.

Onceuponatimethen · 02/12/2020 13:57

The most important thing about this thread is that a frightened mother who is struggling posted for support. Having been in her place I know exactly how that feels.

Celebrating the incredible value and talents of people with ASD does not entail denying the reality of the difficulty involved in parenting a neurodiverse child in an NT world. Many of us struggling parents are ourselves actually neurodiverse.

I hope op doesn’t mind me saying that she isn’t coming back and is seeking support off board. I would really ask posters to reflect before reacting to posts like this one in a way that drives parents away.

What op most needs is calm practical guidance and reassurance that she can handle this very challenging time in her life.

I am personally incredibly grateful to posters on mn who took the time to do that for me at incredibly hard times in my own path to realisation that I would be parenting dc with sn.

If we could try to react to posts like this on here as we would to a friend asking us this, I think we could collectively really help people in op’s position

Wheresmykimchi · 02/12/2020 17:23

@Onceuponatimethen

The most important thing about this thread is that a frightened mother who is struggling posted for support. Having been in her place I know exactly how that feels.

Celebrating the incredible value and talents of people with ASD does not entail denying the reality of the difficulty involved in parenting a neurodiverse child in an NT world. Many of us struggling parents are ourselves actually neurodiverse.

I hope op doesn’t mind me saying that she isn’t coming back and is seeking support off board. I would really ask posters to reflect before reacting to posts like this one in a way that drives parents away.

What op most needs is calm practical guidance and reassurance that she can handle this very challenging time in her life.

I am personally incredibly grateful to posters on mn who took the time to do that for me at incredibly hard times in my own path to realisation that I would be parenting dc with sn.

If we could try to react to posts like this on here as we would to a friend asking us this, I think we could collectively really help people in op’s position

Sorry - but isn't people saying that she doesn't need to feel terrified and heartbroken calming reassuring advice? I'm not sure what posts you're referring too though.
dairyfairies · 02/12/2020 17:40

Sorry - but isn't people saying that she doesn't need to feel terrified and heartbroken calming reassuring advice?

I think once has an issue with me and a few other posters who disagreed that autism isn't such a big deal and nothing to be depressed about. I wrote as a parent of a severely autistic DD and the challenges and sometimes incredible hardships that come with it.

DD is much loved but unfortunately without the 'incredible talents' once is attributing to those with ASD. Well, she can make some pretty cracking frog noises repeat for hours esp at night. Does that count??? Grin

CantBeAssed · 02/12/2020 17:52

Op your ds is only 22months..a lot of what you have described is totally normal behaviours for a toddler...certainly a mothers instinct is strong and should be listened to but i think your getting ahead of yourself...no 2 children are the same...no 2 children with asd are the same...your are foreseeing a situation that may not be anywhere near as bad as you think..at this stage you have no way of knowing...and for your on sanity..stop googling!Smile

Onceuponatimethen · 02/12/2020 17:56

It’s not my issue @daisyfairies. It’s the poor op who looked to mn for support but found this thread so upsetting she had to come off it after only two hours.

Ask yourself, would the responses saying it’s nothing to be depressed about be what op would get from a portage worker or a parent support group? If not, why might that be?

I would hope professionals or peer support groups dealing with a parent in the frightened place where op was / is would start with compassion and understanding.

dairyfairies · 02/12/2020 18:06

Ask yourself, would the responses saying it’s nothing to be depressed about be what op would get from a portage worker or a parent support group? If not, why might that be?

I have never had that from a medical professional or a parent support group. I think it is dismissive and minimising and hence did not dish this advice out. you might be confusing me Smile

Onceuponatimethen · 02/12/2020 18:30

@dairyfairies sounds like I misunderstood your post - apologies.

I have a dn with lds (no asd dx) She can also make some very impressive noises, so I may have experienced the loud sounds on repeat!!

I am basically just a learner at all this too. But just one simple plea. Please can we try to see where parents like this are coming from and respond as we would to someone we knew asking us this in RL.

Duggeehugs82 · 02/12/2020 18:54

I think the most fustrating thing i kept hearing from other parents when i was feeling like this OP said was "she will be fine, she is still so little, she will catch up" it was fustrating because i knew at 20 months there was something wrong and dismissing my fears mainly due to misguided view of being helpful. If i had people who listen to my worries and was honest didnt have to make me sound like life would end but was honest enough i would have definitely appreciated it. Telling someone a child with autism is not the end of the world and not a worrying time becuase their children with autism is fine , isnt helpful personally. Maybe a debate on why people feel the need to "defend" autistic children when parents explain how hard life can be with a severe autistic childn isnt the best place however it can be so dismissive to a parent who has their while life turn upside down and not in the best way due to their daughters autism. There should be discussion about this. So people can not feel unheard and dismissed like on this thread.

Wheresmykimchi · 02/12/2020 18:59

@Onceuponatimethen

It’s not my issue *@daisyfairies*. It’s the poor op who looked to mn for support but found this thread so upsetting she had to come off it after only two hours.

Ask yourself, would the responses saying it’s nothing to be depressed about be what op would get from a portage worker or a parent support group? If not, why might that be?

I would hope professionals or peer support groups dealing with a parent in the frightened place where op was / is would start with compassion and understanding.

I would hope so.

If a parent was saying these things pre diagnosis I would hope there is nothing to be heartbroken and depressed about would come out their mouths yes!

I really honestly can't see why OP was so upset she couldn't come back. Did people prefer the hideous posts about autism wrecking life's?

Wheresmykimchi · 02/12/2020 19:00

@Duggeehugs82

I think the most fustrating thing i kept hearing from other parents when i was feeling like this OP said was "she will be fine, she is still so little, she will catch up" it was fustrating because i knew at 20 months there was something wrong and dismissing my fears mainly due to misguided view of being helpful. If i had people who listen to my worries and was honest didnt have to make me sound like life would end but was honest enough i would have definitely appreciated it. Telling someone a child with autism is not the end of the world and not a worrying time becuase their children with autism is fine , isnt helpful personally. Maybe a debate on why people feel the need to "defend" autistic children when parents explain how hard life can be with a severe autistic childn isnt the best place however it can be so dismissive to a parent who has their while life turn upside down and not in the best way due to their daughters autism. There should be discussion about this. So people can not feel unheard and dismissed like on this thread.
Flip it for a second.

Do you not think autistic people on the thread might have felt dismissed or unheard when people were posting about it being a death sentence and heartbroken and depressed about the horror of it?

Duggeehugs82 · 02/12/2020 19:05

Where no because i would assume they were able to distinguish between their life and other peoples, other peoples experiences can be different, just because some peoples experience is very negative doesnt makes everyones experience negative.

x2boys · 02/12/2020 19:07

The thing is when people talk about being heartbroken they are talking about there own situation ,not other autistic people's situations ,as they saying goes you have met one person with autism you have met one person with autism,for some people autism may just be a difference , something to be celebrated ,for other people like my child it's a life long severe disability and he will need life long care ,people can only talk about their own experience nobody else,s

Duggeehugs82 · 02/12/2020 19:09

If people were to say my childs autism is positive etc but its not like that for everyone then thats ok more than saying its wrong for u to say autism is a bad thing because i dont see it that way

Wheresmykimchi · 02/12/2020 19:11

@Duggeehugs82

Where no because i would assume they were able to distinguish between their life and other peoples, other peoples experiences can be different, just because some peoples experience is very negative doesnt makes everyones experience negative.
You thought that autistic people would find it easy to understand that that's someone else's emotions and feelings and doesn't represent them. Righteo.
Wheresmykimchi · 02/12/2020 19:12

@x2boys

The thing is when people talk about being heartbroken they are talking about there own situation ,not other autistic people's situations ,as they saying goes you have met one person with autism you have met one person with autism,for some people autism may just be a difference , something to be celebrated ,for other people like my child it's a life long severe disability and he will need life long care ,people can only talk about their own experience nobody else,s
Exactly!

So why can't I post about the positive experiences with ASD without getting jumped on by posters who interrogated me as to whether I've ever lived the sad life wrecking experience of an ASD child. It's hypocritical!

Duggeehugs82 · 02/12/2020 19:14

When i talk aboit my experiences i do not talk for everyone elses is, i would hope thats obvious, yes some people maybe struggle with that concept and if they do they we need to collectively as a group help support them not just allow them to think that because they struggle with it.

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