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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:
Nottherealslimshady · 26/11/2020 17:37

Ok so you need to stop panicking. He may be autistic, he may just be a toddler. Being autistic is not the worst thing that can happen. You face different challenges, perhaps more I suppose than neurotypicals but it's not like he has some serious illness.

He hasn't got autism from watching too much TV either so stop beating yourself up.

Yes there are autistics that do not live independent lives and that never speak. But there are also autistics who are just a bit different and theres a whole spectrum of people in between.

It's hard to know what the chances of an autistic person being on one end or the other of the spectrum, obviously the "low functioning section" is easier to diagnose, the high functioning less so. So fewer high functioning individuals get the diagnosis which skews the percentages.

I have found autism an obstacle in my life, but my sister found maths an obstacle whereas I didn't. Everyone has their own obstacles. I was non verbal as a child, had speech therapy when I was around 6-8, I did have a lisp and still stammer a bit, never been a big talker but I can make my voice heared now. I am an adult, with a degree, I own a home, I'm married, I have a dog and a baby on the way.

Being autistic doesn't mean he wont achieve great things in life and if he is autisitic then you really need to take that image out of your mind of someone who wont achieve, because if that's what you believe and what you tell him then that's what will happen.

So, stop stressing and blaming yourself, interact with him, encourage speech, dont worry about a speech therapist yet, it was more about feeling comfortable speaking than actually being physically able personally, unless there is something wrong with his speech. And if he's autistic it'll be fine.

ittakes2 · 26/11/2020 18:27

Please google infant reflexes not going dormant and see if this applies to him.

rosiejaune · 26/11/2020 21:01

If you are so terrified, then take action to make society more accessible to and equal for autistic people, rather than being upset by his potential variation in neurology.

duckinatruckwithmuck · 26/11/2020 21:07

You'll be having the 2 year developmental check soon with the HV. Call them up beforehand to make sure it's definitely going ahead and you've got concerns you'd like to address- they'll make all the referrals.

Fr0thandBubble · 26/11/2020 22:30

rosiejaune Yep, sure OP as a single mother to two young children and on benefits, currently scared out of her wits, is going to sack off trying to help her son who is potentially autistic and instead go on a one-woman crusade to change society’s views towards people with autism 🙄. Fucks sake.

Onceuponatimethen · 26/11/2020 22:51

Really people are ridiculous on here. Being a single parent on a low income is hard enough. Every single parent of a child with sn that I know (including me) really struggles a lot of the time.

Op many of us do get it. I have very much loved family members with ASD and almost certainly have ADHD myself plus likely ASD traits. However, it is not easy being a parent of a child who has a speech delay and can be lonely and very frightening

HmmSureJan · 26/11/2020 23:40

@rosiejaune

If you are so terrified, then take action to make society more accessible to and equal for autistic people, rather than being upset by his potential variation in neurology.
That is genuinely one of the most ridiculous posts I have ever read on this site 🙄
Onceuponatimethen · 26/11/2020 23:48

Apart from anything else, it’s the parent’s’ ability to identify the delays that leads to children getting help. So parental anxiety is actually useful. My dc with sn is very sociable despite his difficulties so would have been profoundly lonely if he couldn’t speak. But it was my anxiety about his delay that made sure he got early intervention SALT

lborgia · 27/11/2020 04:20

@HmmSureJan - it takes a lot to leave me speechless, but your attitude is disgusting.

For my child, and many autistic people I know, the main exhausting, distressing factor is the clash between how the world insists everyone should be, and how they actually are.

I'm not talking about support for intellectual and physical disabilities, I'm reframing to assumptions, road blocks, and ablism.

People can be productive, funny, capable, whatever, but the pressure of being able to hide their differences is what produces the phenomenal rates of anxiety, depression, and suicide.

You have no fucking clue.

HmmSureJan · 27/11/2020 06:26

[quote lborgia]@HmmSureJan - it takes a lot to leave me speechless, but your attitude is disgusting.

For my child, and many autistic people I know, the main exhausting, distressing factor is the clash between how the world insists everyone should be, and how they actually are.

I'm not talking about support for intellectual and physical disabilities, I'm reframing to assumptions, road blocks, and ablism.

People can be productive, funny, capable, whatever, but the pressure of being able to hide their differences is what produces the phenomenal rates of anxiety, depression, and suicide.

You have no fucking clue.[/quote]
Which particular post of mine "disgusts" you? I am the single mother of two autistic children. There's very little you can tell me about how society views autistic people and fwiw now that my children are teenagers I am involved in local activism and raising awareness.

Tell me exactly what is helpful or even sensible about advising a frightened single mother of two, not to worry if her own child has autism but to focus entirely on activism directed towards changing wider society as a whole to accommodate all autistic people?

Then please do go back through my multiple posts on this thread and actually quote anything I have said that is "disgusting" or unsupportive towards the OP. Thanks Smile

lborgia · 28/11/2020 00:29

This: "That is genuinely one of the most ridiculous posts I have ever read on this site 🙄".

HmmSureJan · 28/11/2020 09:09

Well it is 🤷🏼‍♀️ under the circumstances. "Don't worry about your own kid, change the whole world first despite having no resources or knowledge to do so". Where's the support in that? Where is the practical help? Op hasn't even come back. Put off my the nasty posts I should imagine.

You really should apologise for your post you know. You decided to deliver a lecture about autistic people clearly indicating I had posted attacking them in some way. You told me you were disgusted by this when it is quite clear you misunderstood what I was saying and I was doing no such thing. You haven't addressed any thing I said in my response to you just doubled down on your initial misunderstanding. Most ungracious. Probably best just to leave it there. I won't respond to you again.

lborgia · 01/12/2020 02:30

I don't think I misunderstood, and I just didn't have the energy to get into it. I still don't. I'm ill, the kids are ill, and, you know, autistic life generally.

The idea that I was tough on you, but toy weren't tough on the pp is ironic.

Good job you're done being involved, you won't have to get into it either.

Tumbleweed101 · 01/12/2020 06:30

If you’re on a low income you might be able to get 2yo funding for a nursery placement. The staff will quickly know if his development is age appropriate and if it isn’t they can help you make the necessary referrals. Just an idea to help you gain some professional, non bias support. Nursery staff are very experienced with this kind of concern.

Tumbleweed101 · 01/12/2020 06:35

I’ve seen a variety of autistic children since working at the nursery and the concern is real. For some families a child’s autism can be difficult and life changing but for others it can be not much different to raising any child with their own quirks. Getting early support so the child has access to what they need early on seems key.

Anon778833 · 01/12/2020 06:46

I have two autistic children - one with very high care needs and the other needs a lot of extra help but probably will live independently. I’m also autistic myself so I understand the diagnosis procedure very well.

If your son was my child I would be pushing hard for a referral. From what you describe, your ds definitely needs an assessment with a developmental paediatrician. Honestly, don’t even bother with the health visitor - they know nothing about autism whatsoever. The lack of pointing and lack of showing you things or sharing play are the main things that would concern me.

Please don’t panic though. Easy for me to say, I know but early intervention is key. If you can get an assessment it’s not just about getting a diagnosis but a full understanding of his profile.

Even if he is autistic you will find ways to help him. And there is help out there - you can apply for DLA to help with financial costs. But you have to push - this is the one thing I have learned.

ambereeree · 01/12/2020 08:37

@Nottherealslimshady thank you for posting on this thread. My 2.5 year old is autistic and I'm always looking to hear an autistic adult voice and joined lots of groups to speak to autistics about their challenges and how I can help my son better. He's very clever, affectionate, funny and not that social with children yet...which of course doesn't fully fit the stereotype.

User594022452 · 01/12/2020 08:50

@HmmSureJan @Onceuponatimethen
Ignore them...rosiejaune posted utterly vile things on another thread a few months ago and I'm surprised s/he is still active. It was started by a mother who was at absolute breaking point caring for her son with severe ASD. Instead of showing any understanding, rosiejaune shredded her apart for being unsupportive towards people on the ASD spectrum because they clearly take all posts regarding autism on MN personally. The comments were deleted because they were unspeakably cruel. That post above is nothing in comparison.

Nottherealslimshady · 01/12/2020 08:58

@ambereeree I'm glad it was useful to you.

You'll notice there is often a lot of conflict between adult autistics and the parents of child autisitics.

I do think many parents of child autisitics nowadays are focused on changing the world to fit their child better. It's quite new that way of thinking, adult autistics were raised to adapt ourselves to the world. My childhood was hard, I had to force myself to do things that I found painful. But now I can do things I couldn't have done otherwise. So I'm glad of that.

I dont think you can change the world, it's a neurotypical world.

I would recommend focussing on teaching your son how to adapt his behaviours and responses to succeed in the world as it is and I do think you're right that a great way to learn this is to be around and ask the adult autistics who are actually doing for themselves. If the world becomes easier, then great, but he'll still be better off.

You sound like a great mum, your son's lucky. Don't worry about the socialisation, he'll find his pack :)

Anon778833 · 01/12/2020 10:42

I do think many parents of child autisitics nowadays are focused on changing the world to fit their child better. It's quite new that way of thinking, adult autistics were raised to adapt ourselves to the world. My childhood was hard, I had to force myself to do things that I found painful. But now I can do things I couldn't have done otherwise. So I'm glad of that.
I dont think you can change the world, it's a neurotypical world.

Yes, I think there is definitely a balance. I think that you can try to work on functioning better in a world that wasn't designed for us, but also focus on ways of coping with those stresses during your own down time. This is what I, personally do.

20shadesofgreen · 01/12/2020 11:36

In my experience people are doing both trying to raise awareness for ASD while teaching their child skills and strategies. I have never yet met a parent who wasn’t interested in both with the strongest focus on parenting their own child first.

PamwichShilling · 01/12/2020 14:56

I think rather than worry about your DS, you need to seek help for your own mental health issues. Your reaction is extreme and shows a lot of ignorance about autism.
Your DS sounds normal but even if he did have ASD he would still be the same child.
One of my children has ASD, I first raised concerns at 1 year old, he was diagnosed at 8. I didn't spend 7 years worrying about it, we just got on with life and I hardly even think about his diagnosis. He's just who he is and I wouldn't change a thing about him. He's a kind, funny, intelligent and interesting boy.
Mention his speech to the HV and go to a GP about your anxiety. I hope the responses on this thread have reassured you op. Please don't worry.

dairyfairies · 01/12/2020 18:10

I didn't spend 7 years worrying about it, we just got on with life and I hardly even think about his diagnosis

ASD is a huge spectrum. not everyone has a child with autism that enables them to go in with live. My DD is low functioning and her autism impacted every single aspect of my life. how can you do on with a normal live with a severely disabled child that will force you our of work, alienate you from all your friends and puts on so much strain on your marriage that the other half just leaves because they cannot cope with the tantrums, meltdowns, crying, night waking, every single aspect of personal care not to mention the lack of communication, no access to childcare (i.e. losing your job). most of your friends deserting you because you. ..

how can you be so dismissive and say it's nothing really to worry about. Autism wrecks lives.

x2boys · 01/12/2020 18:20

Indeed @dairyfairies people can be so dismissive of how autism can affect some individuals .

x2boys · 01/12/2020 18:22

And it's quite ironic that the above poster accuses the Op of being ignorant of autismHmm