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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:
ambereeree · 25/11/2020 20:40

Speak to your HV if you're worried. Remember he's still the same lovely cuddly boy whatever happens. Believe me when I say I really do understand your fears but fretting will not help you.

Piffle11 · 25/11/2020 20:46

Does he seem to know what you’re saying to him? If you said, ‘DS, pick up the book for mummy’, would he do it? Obviously this isn’t a yes or no test, but my DS has severe ASD and wouldn’t have had a clue at 22 months. My other DC has suspected mild ASD and/or ADHD and he didn’t talk much before 2.5 years (hasn’t shut up since). If you DO get a diagnosis of ASD it’s hard, but not the end of the world. And your paediatrician should be able to signpost you to local help. My DS’s school is amazing, and we appear to be in an area that has a lot of help available. Hopefully you’re just worrying unnecessarily x

Piffle11 · 25/11/2020 20:49

We started off by asking for a referral to Speech and Language Therapy - they were the ones that instigated the diagnosis. Someone there knew what was going on and set us off on the route to diagnosis. See if you can get a referral - it seems a long wait until the next check for you. The sooner you start the process, the better x

Luke2019 · 25/11/2020 20:52

@Piffle11

Does he seem to know what you’re saying to him? If you said, ‘DS, pick up the book for mummy’, would he do it? Obviously this isn’t a yes or no test, but my DS has severe ASD and wouldn’t have had a clue at 22 months. My other DC has suspected mild ASD and/or ADHD and he didn’t talk much before 2.5 years (hasn’t shut up since). If you DO get a diagnosis of ASD it’s hard, but not the end of the world. And your paediatrician should be able to signpost you to local help. My DS’s school is amazing, and we appear to be in an area that has a lot of help available. Hopefully you’re just worrying unnecessarily x
Hi. No, he wouldn't understand that. I'm petrified. I forgot to add, my mum bought him a shape sorter which he took to straight away and enjoyed putting the shapes back in the holes. He pushes cars around the floor sometimes. He does have some repetitive play behaviours but they only last for a few min. I tried to get him to copy me feeding a baby doll the other day, he did copy putting the bottle to it's mouth for a split second then walked off.
OP posts:
Luke2019 · 25/11/2020 20:54

It sounds awful, but I feel so heartbroken and depressed.

OP posts:
TheRubyRedshoes · 25/11/2020 20:56

Op I'm sure he will be fine but whilst the brain is so young there is nothing wrong with giving him more intense help.

Definitely try and get to salt and speech and language sessions or tips.

Other simple things.. Take car... Say on table, under table and place it under the table etc.

Same with any object, toy cow, bus..

Bus, red bus, red bus on table etc to expand...

Good luck op... I'm sure he will be fine but getting in early is always a big key to these things

TheRubyRedshoes · 25/11/2020 20:59

Op you are jumping the gun a little...
Children do also learn a great deal from the repeating...

Bowserlovesmojitos · 25/11/2020 21:00

Hi op,

I've been in your shoes and know the fear and anxiety. What you've described sounds pretty similar to my ds at that age. And he has since had an asd diagnosis.
He's a sweetheart but there are challenging behaviours we've had to adapt to. It's hard to adjust to the differences this makes to life but you love your children and do whatever is necessary.
Is your ds at nursery? Do they have any concerns? We had concerns which we discussed with HV and as soon as he started nursery they flagged it as well so got all the balls rolling.
He was referred for speech and language therapy which again, the therapist was able to suss out what was going on as well.

Ask your HV for a sogs (schedule of growing skills) assessment as this will give a clearer indication of any issues.

Asd does not mean severely disabled and special schools aren't negative. If you had a child with a physical issue you would approach a school designed to help them, same with developmental issues.

Feel free to pm me if you want any other details.

It's bloody hard and scary and at this age it could be something or nothing. Trust me that early intervention is best so if you're concerned push push push for help.

lborgia · 25/11/2020 21:02

Please stop. Just stop. The biggest issue here is your catastrophising. Please talk to your GP about getting some help, and /or some medicine.

THE most important thing you can do for an autistic child is regulate your own emotions. Your son may or may not be autistic, but how he gets on with it depends on your reaction to it.

At the moment you're spending a lot of time getting him to jump through hoops, to try and allay YOUR fears, he will pass your random tests or not, but it won't make him feel any more secure, loved, or content. Doesn't seem to be helping you either.

It sounds as if you have a reasonable health visitor, so someone is happy to help when the time is right.

You need help to stop seeing him as potentially ruining your entire life, and get used to the fact that you will be his main advocate for the next 15 years at least, whatever turns out to be the truth.

If you don't sort out your own mental health, you're both going to have a difficult few years, autism or not.

Go, speak to your GP.

sosotired1 · 25/11/2020 21:05

Get some referrals in place and then be kind to yourself (on some level all parenting involves grieving for the child we thought we would have) and try not to think too far ahead. Your child might have ASD... they might not. Even if they do, it's not the end of the world. Yes, it's a different world but you will learn to navigate it. Enjoy your son in the moment as best you can.

sosotired1 · 25/11/2020 21:06

Iborgia is very sensible, regulating our own emotions is hard but so important.

Luke2019 · 25/11/2020 21:09

Thanks everyone. I'm a mess right now and can't stop obsessively googling. Should I wait for his 27m check like the HV says o or contact the G P to set up a referral for him? Also to get some help for my anxiety.

OP posts:
Daisychainsandglitter · 25/11/2020 21:09

Hi OP I didn't want to read and run as I can see how anxious you are feeling.
Please try not to worry. Your DS is still very young and may be a little delayed.
My DD was diagnosed shortly before she turned 4 and we were told then that she was very young to receive a diagnosis but I think we knew there was something amiss probably from about the age of 12 months.
How is your DS with your DD? Does he interact with her at all?
Please try not to worry. It sounds like you've contacted the right channels who will review again when he's a little older.
Even if it is ASD you will accept it and it won't change your DS from being the loveable little boy that he is.

Daisychainsandglitter · 25/11/2020 21:11

Excellent advice from iborgia!

Luke2019 · 25/11/2020 21:14

@Daisychainsandglitter

Hi OP I didn't want to read and run as I can see how anxious you are feeling. Please try not to worry. Your DS is still very young and may be a little delayed. My DD was diagnosed shortly before she turned 4 and we were told then that she was very young to receive a diagnosis but I think we knew there was something amiss probably from about the age of 12 months. How is your DS with your DD? Does he interact with her at all? Please try not to worry. It sounds like you've contacted the right channels who will review again when he's a little older. Even if it is ASD you will accept it and it won't change your DS from being the loveable little boy that he is.
Hi, his sis is quite full on and drags him around quite a bit which understandably annoys him a bit. I constantly have to remind her of his age and to be gentle. He does enjoy being tickled by her though and laughs lots. He makes good eye contact then too. She was throwing a cushion in the air earlier and he picked one up and copied, laughing. He mostly seems in his own world
OP posts:
TheSoapyFrog · 25/11/2020 21:14

Ok, calm yourself down a little. You really are jumping the gun here. I'm a single mum to 6 year old twin boys, one diagnosed with severe autism and learning disabilities and the other possibly on the spectrum. It really isn't as terrifying as you've convinced yourself! My son is still my son and as his mum I find ways to cope.
Let the HV do the assessment. Chances are there will be a paediatrician's appointment thereafter.
If he is autistic and you're in the UK, you won't need to pay for therapies. FWIW, my son goes to amazing SEN school.
The best advice I can give you is to chill out. Don't keep trying to get him to do this and that because you think it's something he should be doing. And for the love of god, stop googling!!!

DrManhattan · 25/11/2020 21:17

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

toconclude · 25/11/2020 21:21

Leave off the Googling for a start. Many people with autism are nothing like the worst case scenario for a start. DS went to special school with an autism base and now has a Masters. He is still autistic of course and it has its challenges, but honestly at this point you have no way of knowing how life will pan out. One day at a time.

lborgia · 25/11/2020 21:26

@Luke2019 - what do YOU think is the right answer to your question? What do you think would be most helpful.

I'm going to go with b) - which I'm sure you know is actually the sensible choice. If there's a way to get earlier intervention it will make you feel supported, and get an answer earlier.

This is where you start advocating, and being the grown up. Taking responsibility for your own mental health, and finding the right pathway through the health care system for your son.

And get some sleep.

Juliehooligan · 25/11/2020 21:28

Like others have said, stop googling! I would speak to your doctor about your anxiety, as you sound like you need a little help. Your son will be fine autism or not, as there are wonderful schools out there that are totally inclusive.

Luke2019 · 25/11/2020 21:29

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 posts:
Higgeldypiggeldy35 · 25/11/2020 21:30

Every child develops at a different rate and none of things you've described scream ASD to me. I think you need to stop googling and speak to the GP about your anxiety as you are catastophising and he will pick up on your anxiety. Just continue to encourage him with his speech, and engaging him in things you're doing like you already are and give it some time. Please be kind to yourself and stop the googling, it's so bad for your mental health.

autumnboys · 25/11/2020 21:31

At this point, you’d quite likely end up in a wait and see pattern with Drs, or discharged because he’s little. Try and enjoy him - if at some point he gets a diagnosis, he’ll still be the same child, your little one. You sound like a loving mum and it’s natural to worry about your children, but try not to spend too much time googling, it is very dispiriting and it takes no time at all to get to the worst case scenario.

I didn’t have a clue when my ASD child was two that there was anything wrong really. And he was my third, older two are both NT, so I had comparison points. It plays out differently for us all.

Does he go to nursery at all, or is he due to soon? Sometimes they can be helpful.

Flowers
wellhellohi · 25/11/2020 21:31

Hey, I've been where you are I first voiced my concerns about my son when he was 20 months. My family thought I was over reacting but a mummy knows their child.

He was diagnosed just after age 3. It was tough, it was emotional. He is now nearly five and the one thing I wish I could go back and tell myself is 'it will be ok'. At times I have been completely overwhelmed by him but mostly I learn from him every day.

Get a speech therapist asap even if this means paying privately. They were the most help in assessing and eventually diagnosing my son.
You are going to have to fight constantly to get help for your son. You will need to be strong. You will find that strength it is in there. But ask for help if you need it.

bitheby · 25/11/2020 21:32

It's really hard to read this thread as an autistic person. A) you don't know yet and B) it's not a life/ death sentence even if he is.