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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:
Willbob · 03/12/2020 21:44

This reply has been deleted

Message withdrawn at poster's request.

Willbob · 03/12/2020 21:48

Actually I was right first time with not helpful.

Anon778833 · 03/12/2020 22:01

But the fact is that the two things are not separate at all. The mental health problems are part of the autism in both of our cases. Or at least caused by the autism not the other way around.

Nobody I personally know sees people with higher care needs as any kind of 'stain' but one group I was in once did implode because some people were expressing offensive comments about people with higher care needs not being in the group.

As a parent you may think that you'd prefer your child to have a job / degree. And that it's a sign of things being somehow better. My dad and I both have degrees, both have had jobs but we both also have been in and out of psychiatric hospitals and we struggle with day to day things that most people can easily do. I have had one shit relationship after another because I'm so easily taken advantage of. I'm terrible with money. All of these things are a part of my diagnosis. My mother has the two of us to worry about which has impacted her.

Could my dad and I really be said to be much better off than my 18 year old? She lives in a specialist unit for young people with autism. Within that framework, she does function very well. Her behaviours have all disappeared. She learns new skills every day. She has stopped self injuring, she has started taking an interest in what she wears, and in 'normal' activities that teenagers like. She's happy and to her, her life is happy and meaningful.

If I were to start saying that things would have been better if she had a job, I'd only be projecting from my own POV rather than hers. It's understandable that people do this but I'm just offering another perspective.

Willbob · 03/12/2020 22:20

I do understand what you are saying but I do not agree with mental health issues being part of autism. Not everyone with autism has my needs and many mh needs (of those I've met) wouldn't have come to pass of would have to a lesser extent if the right support was in place earlier.

There is a campaign at the moment for more parents to challenge camhs when they use this reasoning to not help children with autism (an excuse for cost saving) the campaign is aimed at getting parents to challenge as all are entitled to nhs services regardless of other diagnosis.

If mental health issues were part of autism they would be included in the diagnosis but they aren't. While they impact on each other including mh impacting on autism eg self harm (non sensory) becoming routine rather than behavioural, mental health issues aren't a defining factor of autism.

Yes I would rather my child have a job and be independently than be in a unit of any form for a any reason but when talking about just autism I would love my child to be 'high functioning' without my needs.

I do feel for both you and your dad but the hospitalizations are for different reasons.

Duggeehugs82 · 03/12/2020 22:47

I would see it simply as a person needing 24 hour care and a person not or the person who is not having the 24 hour care struggling with life but not to the extent they need a 24 hour carer. Its the independent, not so much degree, job , relationships etc.

Willbob · 03/12/2020 22:59

Auto correct of "my needs" should be mh needs

Duggeehugs82 · 03/12/2020 23:06

When my daughter becomes an adult and she is able to dress herself, feed herself, toilet herself and not needed to b watched constantly due to eating everything off floor, if she is able to not constantly spend her time running up and down living room or climbing as high as she can with no sense of danger. That would b a win for me. If she can do all that by herself and it might causes considerable stress doing it but by me not having to do that, thats a step up to me.

Willbob · 03/12/2020 23:06

@SugarbabyMilly the other thing to consider is that both you and your dad have had relationships, your dad got married and had children. It is highly unlikely people with severe needs would be capable of this. You may struggle with money but people with severe autism don't usually understand the basic concepts and don't have control over their own finances. The situations you describe are just not comparable.

@Duggeehugs82 I agree

Duggeehugs82 · 03/12/2020 23:14

Her having a degree, having a job or having any relationship with anyone apart from me and her dad (i would love her end to even be able to acknowledge her younger sister) so far away from where we r , they do not seem possible.

Preparefortheflaming · 03/12/2020 23:15

My son was diagnosed ASD at 2 years old. I cried. However I wouldn’t change him. His autism has made him who he is and he is the kindest, funniest most loving and amazing child. He is now a teen and has been through mainstream schooling with few issues and the funny behaviours have got less and less as he’s grown up. Just go with it and don’t get yourself in a state. What will be will be and it’s very common.

Wheresmykimchi · 03/12/2020 23:47

@Duggeehugs82

Her having a degree, having a job or having any relationship with anyone apart from me and her dad (i would love her end to even be able to acknowledge her younger sister) so far away from where we r , they do not seem possible.
Flowers
Hannahmates · 04/12/2020 12:34

22mo is too early to receive a diagnosis. It's usually diagnosed at 3 or older.

Elmo311 · 04/12/2020 13:19

It's normal to worry about our children.
My daughter is 20months, has some signs of Autism. We are under the care of SALT and the developmental paediatrician, who have said that they'll re-assess in 4 months.

Of course I'm worried for her, I know that whatever the outcome I'll be there to support her but it's still the unknown, the waiting etc.

Springmama · 07/02/2021 15:26

@Gunpowder was your DS having SALT while having glue ear? My DS has glue ear in both ears, his understanding is not good( sometimes he does 'click' and does follow instructions but it is rare) & at 22 months he has around 20 words. We don't know how long he has the glue ear for &
how severe it is/ was but it may be affecting his s&l. At the audiology test they were unable to tell us much as he was loosing intrest after hearing a sound once but I could clearly notice that he has not reacting when low sounds were played. We are currently waiting for the second audiology test but as his understanding is poor then I am
wondering if he would benefit from SALT at present or if we should wait until we know more about his issues with hearing caused by glue ear?

JackieweaverhasALLtheauthority · 07/02/2021 16:31

@Springmama you really really need to start your own thread.

luke2021 · 20/10/2021 23:11

Hi everyone - OP here! (I forgot my old login details so have created a new act). :)
Wow .. Nearly a whole year since I first started worrying about my son and posted this. I thought I would leave an update .. My boy is now 2.9y and has made lots of progress actually :) he went from having no communication/understanding, to having lots of communication by hand leading and pointing, although mostly pointing to request atm. :) He now understands simple things such as time to go, dinnertime, bathtime, bedtime, brush your teeth, climb the tree (lol, we spend lots of time outside)! give that to Mummy, up, down, come back, NO! Etc. It's crazy to think that 1y ago he wouldn't even put his arms out to be picked up, he does this a million times a day! He plays with his sister lots more and now drags me around at the park with him, instead of wanting to be on his own all the time. He copies some nursery rhyme actions and in the last couple months, sometimes copies some words. 😊 He's a brilliant sleeper, eats ok. He's much better at walking along with me and holding my hand, he used to bolt! He likes toys, especially cars and his toy ice cream cart were he makes ice creams and pretends to eat them! He's gorgeous and I love him so much. We still have some repetitive/stimming type behaviours and tantrums, but I actually see the tantrums as a good sign that he is trying hard to communicate .. He doesn't have a diagnosis as waiting lists are long, but I'm happy with how he is doing. :)
Thanks for all your help 11 months ago!

nanbread · 20/10/2021 23:23

Great update! You sound so much happier in yourself.

justmaybenot · 20/10/2021 23:48

@lborgia

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.

All this - and please stop saying you're terrified, low and desperate - it's not the end of the world if he does have ASD.
Labyrinth86 · 21/10/2021 00:04

Firstly, he's the same child he's always been so please don't let your concerns cloud your judgement. ASD or ASC as I prefer to call it (condition not disorder) occurs on a spectrum - even if your son meets the threshold for a diagnosis, it doesn't mean that he will be non-verbal or physically aggressive. He may have milder traits such as intense interests, difficulties taking another's view, etc. These are things that can be helped without costing you a penny. The NHS can provide Speech and Language Therapy - at his age, it would also be this service that would be able refer him for an ASC assessment (if you wanted one). Once he begins school, you can ask the Special Educational Needs Co-ordinator (SENCo) to request involvement from external professionals that work in schools (if you want to), such as educational psychologists or autism specialists. This is all free of charge to you as a parent. There is also usually help available through social services for in the home, again free to you.

He may not have ASC in any case but I just wanted to clear up a few misconceptions in the OP.

Embracelife · 21/10/2021 00:08

@Luke2019

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.
Please get help for your anxiety first You cannot change his genetic make up You can get help to calm down so you can get him the best help if it is needed. No one can tell you know how he will be as an older child or adult One step at a time
Labyrinth86 · 21/10/2021 00:09

@luke2021

Hi everyone - OP here! (I forgot my old login details so have created a new act). :) Wow .. Nearly a whole year since I first started worrying about my son and posted this. I thought I would leave an update .. My boy is now 2.9y and has made lots of progress actually :) he went from having no communication/understanding, to having lots of communication by hand leading and pointing, although mostly pointing to request atm. :) He now understands simple things such as time to go, dinnertime, bathtime, bedtime, brush your teeth, climb the tree (lol, we spend lots of time outside)! give that to Mummy, up, down, come back, NO! Etc. It's crazy to think that 1y ago he wouldn't even put his arms out to be picked up, he does this a million times a day! He plays with his sister lots more and now drags me around at the park with him, instead of wanting to be on his own all the time. He copies some nursery rhyme actions and in the last couple months, sometimes copies some words. 😊 He's a brilliant sleeper, eats ok. He's much better at walking along with me and holding my hand, he used to bolt! He likes toys, especially cars and his toy ice cream cart were he makes ice creams and pretends to eat them! He's gorgeous and I love him so much. We still have some repetitive/stimming type behaviours and tantrums, but I actually see the tantrums as a good sign that he is trying hard to communicate .. He doesn't have a diagnosis as waiting lists are long, but I'm happy with how he is doing. :) Thanks for all your help 11 months ago!
I posted my above reply before I saw the update. Great positive news!! Hopefully some of what I wrote may be useful for you Smile
Fr0thandBubble · 21/10/2021 00:43

I could have written your post a few years ago OP, I know exactly how you feel. If you drop me a PM I’ll reply at some point in the next few days (am underwater at the moment with various things but send me a message and I’ll get back to you). Mine is a positive story :)

Cheeseplantboots · 21/10/2021 02:16

@Luke2019

It sounds awful, but I feel so heartbroken and depressed.
It doesn’t sound awful. I sunk very low when i suspected my son had autism. He was 14 months old. Assessment started at 19 months. He’s now 22 and I’m still heartbroken x.
luke2021 · 21/10/2021 22:05

Thanks for the responses to my update. :) My son is progressing more every day. Today, he was watching Peppa Pig and when George was playing with his toy dinosaur, my little boy went and found his toy dinosaurs and copied me saying "Rawr"! He really has come so far in 11 months

needtogetfit21 · 21/10/2021 22:52

All the best to you and your son OP, sounds like you are doing fab! Xx