Terrified my 22mo has ASD

[Luke2019]

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.

To be fair to the OP, it's reasonable to get a child assessed if they are 22 months old and failing the CHAT test. That is a cause for concern. I have an 11 month old and I watch her like a hawk because we have so much autism in the family. She's been pointing to things of interest for some time. But it is all about the bigger picture. I look at all her behaviour every day.

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

I did not get there yet as I got carried away with my other rant. You beat me

You really can't tell how a 2 year old with autism will turn out. Autistic people have incredibly uneven profiles. They can be very good at one thing, and find other things very difficult. My daughter who is 19 is one of the most complex autists that most people who work with her have come across. But she's done very well now and still learns new skills all the time. She's a selective mute but recently has started talking again because her anxiety is under control. There is evidence that autists can continue to build significantly in their education, well into their 40s and 50s.

For some autistic people, things like food or sensory issues are what drives their behaviour daily. For others, like me and my oldest daughter it's the effect our autism has on our mental health.

I also know of a boy who is now 16 and he had his diagnosis removed at about 8 or 9 but this is very rare.

You really can't tell how a 2 year old with autism will turn out

not but going off your 1st reply it is no big deal and nothing to worry about. I disagreed.

My eldest has ASD and now a teen and honestly as well as the limitations there are some unexpected benefits, e.g. hes incredibly resilient and not affected by things like teasing or bullying and is very brave. As long as there are no strong smells in the room anyway...

You're still getting to know each other so dont worry about the relationship to come. I agree speech therapy is a great first step. My son was still babbling when he started school but with some help was able to express himself and things got much easier because I learned what he wanted or was trying to say a bit better. It's frustrating at this stage as some children are popping words out like popcorn but some just get there in their own time.

Sorry not read all of the replies so apologies.

Do not wait to get him seen ask your gp for a refferal to a paediatrician. Its months wait to see paeds under five but if you wait, and hes after five your looking at a three year wait with camhs.

It might be nothing but if it is ASD and there is a speech element then he needs as much input as young as possible. My son was diagnosed at 3 and he was so lucky. He was non verbal but got no speech therapy until he started school at five. I was incredibly lucky to move him then into a Speech and communication school who got him talking in three months.

Even having very mild issues with interaction can can cause big problems in education which are practically impossible to get help for in secondary

I haven't rtft due to the subject being so dividing. I did want to offer the op some advice based on my own experience. If you can afford it and he isn't already enrol your son in nursery.

1. If he does have autism the evidence that nursery can provide will be invaluable evidence for an ehcp if needed, it will provide social opportunities for him and will provide you with respite.
2. have a look on your LA's website under 'local offer' it will detail what services your entitled to and you maybe able (depending on area) to refer to speech and occupational therapy yourself.
3. raise your concerns with the health visitor, do not get fobbed off with wait a d see. If he does have autism, you may lose time with services, it happens alot. As a minimum ask for a hearing test, to rule out hearing issues as a start.
4. look up your local parent forum, it may help you make parent friends who are in a similar position or who have been there in your area.
5. most speech therapy interventions help every child so start with basics now. Find something that motivates him eg spinning and work on stop and go, name everything.
6. you'll have seen from this post that there are divides in the autism community if your son is severe join a few facebook groups for parents of children with severe autism.
7. if he has any sen, read up or learn about ehcp's and the support you can get. Knowledge is power.
8. follow your gut, you're him mum.
9. if he has severe autism, you will need support. There is severe autism, it does exist but it just doesn't get the same time in the main that hf/as etc gets and cant be represented by these groups as they can't understand it.

Terrified?? My child has ASD, it's not the end of the world.....

Well actually it can be terrifying at first when your child is diagnosed with severe autism and learning disabilities ,it took me years to accept it and sometimes I'm still terrified about what will happen to my son when I'm no longer here .

@x2boys, I try not to think about it, it's hard enough and tiring enough just dealing with the here and now. The future petrified me. What happens when we die? What if someone dies something to him and he can't tell us or doesn't understand it's wrong? What if he ends up in a care home like the one on panorama or worse an ATU? These arent even my worst fears.

Yes @Willbob,we have to focus on the here on now as otherwise fear about the future would consume us

My brother, now 31, has ASD. He didn’t speak until he was 4, but we were very lucky with a Barnardos centre locally, and a placement in a language unit in local primary etc. He Ultimately went on to develop a very keen interest in amateur dramatics at uni.

As his sister I found him a bit weird growing up (but then I think many people find their siblings weird/annoying) but as a man he is really amazing. He is married to a really nice woman, is living abroad and learning a new language, has a great job in computer programming.

For most of our childhood he had terrible sensory issues around food and meal times were either marmite on toast or a big meltdown - but thanks to a previous girlfriend he now eats absolutely everything - he just prefers to sauce his own food.

As to your fear that he might never say he loves you - my brother is the most affectionate and deeply feeling man I think I’ve ever known. Always ready to stand up and sing songs that make our mother cry at special events! Lovely (if massively uncool) ❤️

My point is that ASD really isn’t something to be scared of. If your son is ASD, there will be advice and support for you. I don’t think it is necessary to seek expensive private treatment. Also know it is a spectrum and the spectrum is pretty broad. We really thought that my brother was going to be seriously developmentally delayed his entire life - but that hasn’t been the case at all. Yes, there are severe cases of ASD that are non verbal and violent but this is by far the minority and you would likely have noticed more severe signs already. Even these children tend to make progress with good support. You worry that as a single mum that this support might be difficult to access, and I see why but I am sure that this will not be the case, as you seem motivated to find out what his needs are and how you can best support them.

Good luck OP, I hope you get clarity soon and then can start to make a plan for a way forward.

Look OP, my DS3 has adhd, asd and is severely epileptic. After 2 neurotypical DC I did mourn for a life he/us wouldn't have but quickly realised one day at a time is the only way. My DS is amazing and frustrating in equal measure, I never soft soak it, but it really is one day at a time. Stop carastrophising and put one foot in front if the other.

Good luck.

Ps PP who calls themselves and others autistics, I don't agree: my son has autism, he is not autistic or an autistic, he is not defined by his neurological disorder.

Stop googling. There is no reason to be heartbroken and depressed even if he does turn out to have ASD.

@Wheresmykimchi

Stop googling. There is no reason to be heartbroken and depressed even if he does turn out to have ASD.

My child was diagnosed at 2 with autism is non verbal and has significant learning disabilities, she is now nearly 4 maybe i should let my counsellor know that there is no reason for the depression im feeling as someone one on the internet as informed me !

@dairyfairies

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.

Im sorry for what you've been through but that post leaves a nasty taste in the mouth. Autism wrecks lives?

there are severe cases of ASD that are non verbal and violent but this is by far the minority and you would likely have noticed more severe signs already.

how do you rule out severe autism in a 22 months old toddler? Esp over the internet without having ever met the child? Seriously??? Fwiw, nobody (apart from me) had any concerns about DD at that age. Not the GP, not the nursery, not the HV. She is low functioning and on the severe end of the spectrum.

also, severe ASD is not rare. It's just the case that those individuals cannot speak for themselves and only have their autism moms to advocate for them. People with severe ASD don't feature in the media where those with HF ASD are hugely over represented. Those with LF autism simply don't have a platform bit they do exist and not just in miniscule numbers.

apart from that, nobody 'is Asd'.

@lazJaz what a lovely post about your brother.

where
do you cope day in day out with a child with severe low functioning ASD? Have you lost your job because of it? Did your marriage crumble under the strain? Have you been left so poor that you have to decided to heat or to eat? Has your mental and physic health been wrecked by caring without support 24/7? Will you leave a child behind that is utterly and completely dependent on you? You may not find ASD such a big deal but every one is different. It is for me. Sorry if you find this upsetting.

@dairyfairies

where do you cope day in day out with a child with severe low functioning ASD? Have you lost your job because of it? Did your marriage crumble under the strain? Have you been left so poor that you have to decided to heat or to eat? Has your mental and physic health been wrecked by caring without support 24/7? Will you leave a child behind that is utterly and completely dependent on you? You may not find ASD such a big deal but every one is different. It is for me. Sorry if you find this upsetting.

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

@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 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]
This 💗, incredibly dismissive. U also said to the person explaining the reality of their life, it left a "nasty taste in ur mouth" whatever that means

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.

I posted on here the other week because when my son started preschool the head teacher (it was quite an up itself place) was convinced he had ASD. When she wrote a report, got her mate to write a report and even someone from the council he ended up infront of s&l therapists and a pediatrician. They had loads of signs from how he was really into trains, didn't want to talk to them, he licked stuff, it goes on. He got really anxious and the 'signs' got worse. I got really anxious and googled things A LOT. Anyway the paediatrician kicked us out, my son was absolutely fine, he's a clever kid and good as making things and concentrating. Now he's 7 he's never had any problems socialising, learning. He's popular with his friends and his teachers think he's great.

So you can find Google, people on forums or even so called professionals to say anything but only time will tell and chances are your son isn't autistic. I'll never forget one of the 'experts' tell me that my son couldn't speak and the conversations we had weren't real, he was just copying me. I wish she could see how wrong she was.

Anyway really try not to worry, every child is different and different doesn't mean autistic. One book that I really liked was the highly sensitive child. Whether it applies or not a really good perspective on child development.

@dairyfairies

You really can't tell how a 2 year old with autism will turn out

not but going off your 1st reply it is no big deal and nothing to worry about. I disagreed.

@dairyfairies

I think you are confusing me with another poster. Nowhere, have i said it's nothing to worry about. I said I'd be pushing hard for a referral