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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:
firesong · 02/12/2020 19:21

So hard to tell at that age. My DS ignored much of what I said at 22 months and just ran towards everything else, especially things he wasn't meant to. He 3.5 now and very expressive and chatty.

My relative has ASD and told me that she didn't speak as a toddler or young child at all. She talks a lot now!

Willbob · 02/12/2020 19:32

@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.
I feel that this is a much needed debate. From my perspective the problem stems from the inclusion of higher functioning people/ aspergers dx into the autism group dx. People who have a form of autism which allows them to be verbal, hold jobs, go to the bathroom, have a family, live alone etc is a million miles away from people who are severely affected. Unfortunately for the latter group these people have become very vocal (autism is a super power, think Greta T, #actuallyautistic etc) this is great for them as they don't want to be seen as disabled but for those of us who need services to help our children it creates barriers as autism is seen in the main completely differently to the reality that parents and carers of severely affected people face. If you challenge this notion you're possibly judged as being wrong as the people with autism that can verbalize say it isn't really that bad ofcourse these people can't speak for our children as they haven't experienced autism as our children do. I hope they separate the diagnosis again. They're two completely different conditions.
Wheresmykimchi · 02/12/2020 19:56

@Duggeehugs82

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.
I think it's hypocritical to not allow your own feelings to be regulated while regulating other people's.
dairyfairies · 02/12/2020 20:03

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?

but noone said that!!!
people merely pointed out that autism is not just being a little bit different with some challenges but that for some on the spectrum it is extremely debilitating and also has a massive impact on their carers who often care 24/7 until late in life. This side never gets mentioned by some posters who portray ASD merely as some differences and not a disability. It's like the low functioning crowd is a dirty secret that must not be mentioned.

Duggeehugs82 · 02/12/2020 20:04

I find it so difficult as i have a friend who child goes to same sn nursery he has a genetic disorder which effects him massively he is unable to walk limited talk and medical needs, she has very little sleep and is his sole carer. She has a very bleak life she has depression and his disorder has massivly impacked the whole families life. Her depression and feeling of hopelessness is not even questioned .....

Wheresmykimchi · 02/12/2020 20:12

@dairyfairies

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?

but noone said that!!!
people merely pointed out that autism is not just being a little bit different with some challenges but that for some on the spectrum it is extremely debilitating and also has a massive impact on their carers who often care 24/7 until late in life. This side never gets mentioned by some posters who portray ASD merely as some differences and not a disability. It's like the low functioning crowd is a dirty secret that must not be mentioned.

Which part of my list did they not say?

I actually think in this thread it's the high functioning who have been completely ignored.

Wheresmykimchi · 02/12/2020 20:13

@Duggeehugs82

I find it so difficult as i have a friend who child goes to same sn nursery he has a genetic disorder which effects him massively he is unable to walk limited talk and medical needs, she has very little sleep and is his sole carer. She has a very bleak life she has depression and his disorder has massivly impacked the whole families life. Her depression and feeling of hopelessness is not even questioned .....
Your friend has a diagnosed child. So do you. I wouldn't have said that to you.

I said it to someone who has nothing near a diagnosis yet and is guessing. As I've said many times over.

Duggeehugs82 · 02/12/2020 20:15

What im not sure what u mean in ur last comment.

dairyfairies · 02/12/2020 20:15

I actually think in this thread it's the high functioning who have been completely ignored.

no they have not but parents of those with severe ASD talked back. Usually we get drowned out and we are told we have no right to speak as we are not the spectrum ourselves.

Wheresmykimchi · 02/12/2020 20:17

@Duggeehugs82

What im not sure what u mean in ur last comment.
You said it gets to you that your friend is acknowledged and you aren't. I would acknowledge you. It was the OPa original post I questioned. Not every single parent with an autistic child ever.
Wheresmykimchi · 02/12/2020 20:18

@dairyfairies

I actually think in this thread it's the high functioning who have been completely ignored.

no they have not but parents of those with severe ASD talked back. Usually we get drowned out and we are told we have no right to speak as we are not the spectrum ourselves.

I would never say that - I'm not ASD yet here I am.

Your post is a massive generalisation.

Flip the switch.

If OP said she really wasn't that bothered and all was well, would you have still posted about how difficult it can be?

Duggeehugs82 · 02/12/2020 20:21

What thats fair

Wheresmykimchi · 02/12/2020 20:25

@Duggeehugs82

What thats fair
I don't know what you mean sorry.
Duggeehugs82 · 02/12/2020 20:33

Sorry meant wheresmy thats fair

Wheresmykimchi · 02/12/2020 20:34

@Duggeehugs82

What thats fair
I get that it's an emotive subject.

My original point was that she didn't need to feel heartbroken depressed and terrified before knowing the facts. That was all.

Duggeehugs82 · 02/12/2020 20:48

Yes i agree however u have not been the only one commneting and there has been a lot of people saying people shouldnt be feeling all these things when they have diagnosis. As its wrong

dairyfairies · 02/12/2020 20:49

If OP said she really wasn't that bothered and all was well, would you have still posted about how difficult it can be?

I had not responded in that way to the OP (my initial response was practical advice). The debate started when posters pointed out that autism is not really a big thing. It had long moved on from the original query. That is how internet discussion groups work.

in reply to your question - if someone says theirs child's ASD is not an issue for them then I won't argue that. They know their child better than anyone else. ASD is a massive spectrum and I know some are very mildly impacted. No issue with that but I just like to challenge the sweeping statements by some that autism is not really a very debilitating condition because that is simply true. Some are severely impacted by that. I don't get what is so hard to understand about it.Confused I though my posts were pretty clear.

dairyfairies · 02/12/2020 20:58

I would never say that - I'm not ASD yet here I am

If it helps, noone is ASD!!!

One has ASD. Or do you say that he is diabetes or that she is dementia??

Anon778833 · 02/12/2020 21:08

I'm going to say now that no 'level' of autism is 'mild'. If you have a diagnosis, then your life will be significantly impacted.

The autistic community finds functioning labels to be offensive and unhelpful and I guess I can understand why.

But what I would say is that although I was academically able, I've really suffered with my mental health. Have been wrongly diagnosed with other MH conditions before I myself figured out I was autistic and previous to that had psychiatric hospital admissions. So although I officially have AS, I don't function that well really. I still rely on my mum to help me organise my home and my finances because I'm rubbish at it, frankly.

I have more in common with both my autistic daughters than I have with my NT daughter.

Wheresmykimchi · 02/12/2020 21:08

@dairyfairies

I would never say that - I'm not ASD yet here I am

If it helps, noone is ASD!!!

One has ASD. Or do you say that he is diabetes or that she is dementia??

A slip in a type in my keenness to reassure that I'm not the arsehole I was made out to be. My apologies.
Wheresmykimchi · 02/12/2020 21:10

@dairyfairies

If OP said she really wasn't that bothered and all was well, would you have still posted about how difficult it can be?

I had not responded in that way to the OP (my initial response was practical advice). The debate started when posters pointed out that autism is not really a big thing. It had long moved on from the original query. That is how internet discussion groups work.

in reply to your question - if someone says theirs child's ASD is not an issue for them then I won't argue that. They know their child better than anyone else. ASD is a massive spectrum and I know some are very mildly impacted. No issue with that but I just like to challenge the sweeping statements by some that autism is not really a very debilitating condition because that is simply true. Some are severely impacted by that. I don't get what is so hard to understand about it.Confused I though my posts were pretty clear.

Right.

So people aren't allowed to say that they haven't found it to be 'life wrecking ' a previous posters words but you are allowed to say what you are.

It's not that I don't understand , I just don't agree.

Wheresmykimchi · 02/12/2020 21:10

@Duggeehugs82

Yes i agree however u have not been the only one commneting and there has been a lot of people saying people shouldnt be feeling all these things when they have diagnosis. As its wrong
Not guilty.
Anon778833 · 02/12/2020 21:12

Sadly the OP seems to have disappeared. I don't think we've helped her Sad

Wheresmykimchi · 02/12/2020 21:13

@SugarbabyMilly

Sadly the OP seems to have disappeared. I don't think we've helped her Sad
OP left because she was so upset by how awful we all were, apparently (except the select view who are continuing to fight us on their behalf). That's what started this latest discussion.
Silvercatowner · 02/12/2020 21:27

Poor, poor Luke2019. This thread is a car crash of selfish posters wanting to score points.