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.

@autumnboys

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.

Hi, thank you. I had no idea either until I got on bloody Google last week. I just think of the worst case scenario. He is so easy right now but what about the future? My poor boy :( he is starting nursery in April.

@bitheby

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.

Your comment has actually made me feel a lot better so thank you. I have no experience with autism so I apologise for unintentionally hurting you x

It's good to hear that he's interacting Ruth his sister.
You do sound extremely anxious about it all though and you do need to keep that in check. Autism or not you can't change it and you are definitely jumping the gun by grieving for a future that hasn't yet happened.
My DD has autism and she is not without her challenges but she is clever, chatty, friendly, creative and is thriving at mainstream school so it doesn't necessarily mean that the future is so bleak even if and that's a big if your son dies have ASD.

Hi OP

My son was diagnosed with autism just shy of his third birthday. It's quite rare for a child to be diagnosed so young but I had been making noise to anybody who would listen since he was 12 months old. The health visitors approach was to wait and watch as he was so young but I ended up taking him to the GP to be referred via them as I knew my instinct was right and I wanted him to receive the early intervention.

I could have wrote your post as I recognise alot of what you've said.

Obviously nobody here can tell you whether or not he has autism, but I don't think you're unreasonable to wonder based on what you've noticed. My DS was very much the same as your DS sounds at that age.

I just want to echo a PP in saying that you don't need to pay for therapies, they are available via the NHS - for free.

Please be frightened of autism, even if he does have it - it's not the end of the world. I know some amazing autistic kids (my DS being one of them!)

There was a time I worried DS would never speak or interact with his siblings but he got there. He has achieved so much that I feel terrible for underestimating him in the early days when I was in despair about what the future held.

There are some brilliant support groups on Facebook for parents of ASD (or suspected ASD) children, have a look on there too

With not Ruth stupid phone!

Please DON'T be frightened of autism, that was supposed to say.

Christ what an epic fail of a typo.

Im feeling much the same as blithby. Im autistic with 4 autistic children with a wide range of needs and it's not all terrible!
I understand you're worried but please do as youve stated and also seek help for your own anxiety. If your child has additional needs you are their best advocate and theyll need someone calm and regulated to support them.

Keep notes on any concerns, chat again with HV and perhaps SALT and remember... of he is diagnosed he Is the same child post diagnosis as he was walking into the assessment.

Thank you :( I've convinced myself he has it. My family just don't see anything other than a laid back, happy little boy who enjoys doing his own thing

Step away from Google. I have two autistic children. The youngest is severely autistic. I spent a lot of time worrying and panicking and we did so many therapies when they were younger as all I heard was “early intervention”. For both my kids who are very demand avoidant it causes so much stress. Your son is here. You can’t change that. He might be autistic and you can’t change that either. Enjoy him. Be with him.

So he has ASD possibly.
He is still cute little boy.
He wont die from ASD

Both ypur dc need you to be positive take on the challenge and get him the help he needs.

If he is diagnosed it can open the door to early help.
Take it
Go talk to gp
Get him assessed
Get any local local helpl and support

You're probably right, you know your child best.

But it's really sad that your family can see "a laid back, happy little boy who enjoys doing his own thing", and you can't.

The two can co-exist. By your own admission you've no idea what being autistic entails, so maybe ask some autistic people.

And maybe wonder more about providing the best possible life for him, rather than whether toy will hear him say he loves you. He doesn't exist to make you feel loved.

I know, that sounds really mean, but it's hard to hear all your concerns about how it makes you feel, nothing about how he might feel.

Oh yes, and all the endless rounds odd therapy to make him fit into a neurotypical world.

Make sure you never lose sight of what makes him comfortable, and accepted. Many many autistic adults have difficult memories of being square pegs in round holes. A bit more acceptance goes a long way.

@lborgia

You're probably right, you know your child best.

But it's really sad that your family can see "a laid back, happy little boy who enjoys doing his own thing", and you can't.

The two can co-exist. By your own admission you've no idea what being autistic entails, so maybe ask some autistic people.

And maybe wonder more about providing the best possible life for him, rather than whether toy will hear him say he loves you. He doesn't exist to make you feel loved.

I know, that sounds really mean, but it's hard to hear all your concerns about how it makes you feel, nothing about how he might feel.

Gosh, if course I'm concerned about how he feels. I'm concerned about him and what struggles he may now face in the future. I understand I'm not coming across well but I'm struggling at the moment and in a bit of shock. I can't believe I hadn't noticed this

@lborgia

Oh yes, and all the endless rounds odd therapy to make him fit into a neurotypical world.

Make sure you never lose sight of what makes him comfortable, and accepted. Many many autistic adults have difficult memories of being square pegs in round holes. A bit more acceptance goes a long way.

The thought of all the therapies fills me with dread. I just want him to be happy. He is happiest watching minions in the lounge or running around the park.

OP you have noticed it. He's only 22 months and you're on the ball.

Many people reach adulthood before finding out they have autism. My DS's father didn't have a clue he was autistic.

You have spotted some red flags and you want to act on them, that's a good thing.

Just don't forget to enjoy him in the meantime.

I feel in my heart that he has autism. I'm so scared and just want to help him.

It might be nothing! My oldest one was like your son. At that age he would also do this weird thing with his eyes - sort of looking up into the corner - that we initially thought was funny but then started to worry about. He had many other traits too - walking on tiptoes, etc. But he has turned out fine (so far). The younger one is the one I am worried about now!

I hope all turns out well with your boy too.

Try to keep your mind on the here and now if you can. Your boy sounds gorgeous and you obviously love the bones of him.

I echo what some PPs have said - a speech and language therapy (SLT) assessment would be a good place to start. Most NHS SLT services are open referral - basically you can phone them and refer your own child, you don't have to go through GP or HV if you don't want to. Although you might need to ask one of them for the contact details of your local SLT team.

There's also a charity called I CAN that runs an enquiry line where you can chat through your worries with a speech and language therapist. ican.org.uk/enquiry-line That might be worth a try for you. Take care.

OP, my DS 5 is autistic. I noticed the signs at around 8 months old. The HV at his 1 year assessment said she shared my concerns.
Our first referral down the line was actually to audiology you rule out any hearing problems. Then onto speech and language, then onto early intervention services which was a one on one play therapy. They then referred him to the autism Assessment clinic.

It is a thorough and lengthy process and he was diagnosed at 4 years 9 months.

I remember feeling exactly as you've described. I was petrified. However if I'd have known then what I know now, I wouldn't have worried half as much!

He's had a lot of support, all NHS or funded by the education authority. He has a learning assistant for 15 hours per week and has been able to stay in mainstream school. His reading, spelling, writing and numeracy are outstanding! He is out performing his peers in so many areas.

He does face challenges socially, but he has developed meaningful friendships with school friends, friends in our street and also his cousins.

He is so smart, he astounds me daily. He is very practical... will build a train set in minutes.

He has melt downs, but over time and with the support of the ASD clinic and a local ASD charity, we have developed strategies so help him through it.

He will obsess over some things... like trains or tractors, and he'll be able to tell you any fact you want to know about the topic of the moment!

He didn't speak properly until he was 3.5 and now he is so articulate and a great communicator.

Early intervention is key. You'll never reverse his autism but you'll give him the tools he needs to excel and live a full and happy life. My advice is to get involved in local support groups and ASD charities.

We aren't afraid of it any more. We wouldn't change it either... autism is part of him and part of us and it makes him so special. I honestly can't tell you how proud we are of him. He is so affectionate and kind. Please don't be afraid of it... I promise you it will be ok ❤️

Good evening OP,

I know what you are going through I've been there myself, I would say go with your gut feeling, you obviously had some some concern for your little boy otherwise you would not of been googling in the first place. Unfortunately anxiety and the way you are feeling ar this present moment in time so be kind to yourself, you are his mother and you know him best. I was their myself with own DD she was eventually diagnosed with asd it's was a long road and you are only at the starting point.
I would advise you to refer your child to primary care team for speech and language, 0t and psychology assessment. These waiting lists can be long, in the mean time document everything you notice about you child with his behaviours over the coming months as you have a record and you make see a pattern of behaviour.
Sending big hugs and be kind to yourself, a, diagnoses of asd is not going to change your little boy, it's just learning to differnt way. ❤️ Also no two children with asd are the same or present the same, they may have different strengths and needs it's a specrum disorder.

Sorry a few typos there, my hands is going faster than my thoughts.

I was saying unfortunately being anxious and not eating, sleeping is not going to help your little boy at this moment in time. He needs a mummy who is strong and healthy and ready to fight for him in getting the resources he needs, you are his voice.

Best of luck 🍀

Thanks everyone. Should I be making any changes to his diet or giving him extra vitamins? I just want to help him in any way I can

The hardest time for me was the period of thinking my son had ASD but not having a diagnosis. He was very young when I first suspected (12-15 months). My HV said the same ''bring him back when he is 2". In the end I took him to the GP at 15 months who said 'if you're worried, I'm worried' and referred him to a peadiatrician. The pead told me in the first appointment that he thought he was on the spectrum. I had a panic attack after the appointment but have never felt that way again since. We then went through 12 month multi-disciplinary assessment ending in a Severe ASD diagnosis age 2.5. He is 13 now so it was a long time ago, but it honestly was so much better once I was out of that 'is he or isn't he?' stage. Once I knew I felt able to support and fight for him and his needs.

I realize my post sounds overly breezy and dismissive and I didn’t mean it to be! I know exactly that feeling of sick dread when you think something is really wrong with your child, so I really sympathize with you. I have it right now myself. My point was simply that you don’t know anything for sure yet. Trust your instincts and seek professional advice, but try not to get lost in your worries when everything might still be OK.

It's going to be ok. Breathe.

If he is autistic then you've got half the battle won by being prepared to take action and go out to bat for him. So many of us don't get diagnosed until too late and that causes massive problems.

The thing with autistic behaviour in young kids isn't that the behaviour is "autistic", more that it's not age appropriate. So a toddler jumping up and down or flapping because the theme tune they like came on is normal, a 5 year old is more borderline (depends on situation) and a 10 year old not so much.

Remember that mimicry is how they learn at this age. My son is as far as I can tell neurotypical and he sometimes plays repetitively or organises his toys, or sensory seeks with running a car across a radiator. There's such a wide range of normal when little.

You might like to try some schema play. That might be what he's exploring with the spinning. It's totally normal and how toddlers make sense of the world.

I'd wait til 27 month review personally, in the meantime if there are any children's centres near you then have a look and see if they have any speech and language resources. Mine used to do a drop in session once a week, I think they do it online now.

Another fun thing to do would be to explore his interests together. With kindness... He may not respond to you because he's autistic.... Orrr he may just not give a fuck about feeding a pretend baby because jumping from the coffee table to the sofa is a lot more fun (that's what mine is like). If he likes telly then why not try watching cbeebies baby club together and actually getting involved in the songs and stuff? That's been a good one for me.

Have you tried him against the ages and stages questionnaire? They have a autism screening style one too (SE1? I can't remember.

Good luck x