Autism or am I just overthinking?

[Buttercup1999]

Hi everyone,
This is my first post and after reading so many I thought I would just bite the bullet and do my own.
I have a 2yr 4mth old toddler who has been put forward for autism assessment due to an awful 2 year check up with HV. Now whilst I can see why she put him forward that day, I haven't been able to concentrate, sleep (hence the late night post) or eat properly since worrying about him. Please please be honest and tell me what you think from your own knowledge and experiences.

As of his age right now he can
*Make amazing eye contact always with family, people he meets etc
*Recognises and knows names of family, grandparents, aunts, uncle's etc
*Points to things asked of him no problem but I can't remember when he started pointing, was before 2
*Knows most objects and can speak in 2-3 word sentences, "more juice please" "want some cheerios" "love you mummy"
*is fine with different noises
*recognises name and can say name when asked
*understands and follows 1-2 step instructions
*knows colours, alphabet and numbers 1-10 in and out of context
*is starting to count objects
*is very affectionate
*can go up and downstairs holding on himself
*is about to start potty train, can say 'change bum' when he needs it but will avoid if he has sore bum from back teeth coming
*his pretend play is very good, plays cars and makes vroom noises, talks on pretend phone, feeds dolls etc

Things that are concerning me
*jumps excessively and sometimes flaps when he's excited or waiting in anticipation for something like a biscuit or a toy to be opened
*repeating phrases that we say or the last few words just after we say them
*copies everything his big sister (4) does
*rocks from side to side when watching TV or just randomly for short periods of time
*walks on tiptoes at different times throughout the day, mainly in socks but can use flat of his foot too
*used to be obsessed with spinning wheels and helicopter tops but hasn't done that as months
*lines wee cars up every now and then
*spins around himself maybe a few times one day and not another. Can look out the corner of his eye whilst doing so but can say 'turn around' before he does it.

There's prob more things for each list but that's a rough idea.
Am I right to have a concern or am I over reacting? He's a lockdown baby and we are only starting to attend baby clubs in the next month or 2 so unsure of how he will react to other children, he has an amazing relationship with his sister though. Full of fun and giggles together.

Thanks in advance for any responses, much appreciated

There’s a couple of things there (flapping and tiptoes) that are known red flags for autism but the rest of it sounds normal to me - my 5 year old is autistic and had more symptoms at that age.

it will take a couple of years to get any kind of proper assessment or diagnosis (assuming you’re in uk?). In the meantime I’d recommend keeping notes on his development - don’t get obsessed with it just eg brief notes on when he’s talking in longer sentences, does he engage in playgroups etc.

Thanks GoldenGorilla, yep in the UK. Have myself wound up so bad watching his every move and at the same time I don't know why, won't change how I feel about him, it'll make me love and protect him more. It's the unknown of what may be ahead. Thanks for replying, hope your little one is doing well.

It isn't a straight forward process to diagnose autism and checklists aren't really helpful because it's so incredibly diverse in how it presents. Children need to show differences across 3 areas. Language differences, what you mentioned about him repeating phrases sounds like it could be echolalia which isn't typical the older they get. Social differences, the HV may have seen something here. Then repetitive actions/sensory differences, you mentioned quite a few on your list. Waiting lists for assessments are 1-2 years at the moment, so it might be your son grows out of some of these things he does and he doesn't need one. However my advise now is to read up about autism and educate yourself as much as possible, it's really not as big and scary as people think.

I relate a lot to wrote you wrote in relation to autism. Sounds very much like a couple of mine. Don't panic though. He is obviously doing well in many areas.

The main thing is that he gets support set up in case he does need it. Even as a low support needs child it can be lonely and frustrating, growing up being different and not knowing why. However the 'rain man' stereotype is incorrect, it's very possible for autistic people to be independent - work, have families and live fulfilling lives.

There are a lot of misconceptions about autism, such as lack of eye contact, which doesn't apply to every autistic person in every situation.

I think the assessment can only be a positive thing as he's already autistic or not - it can only be helpful to identify it or rule it out.

There are estimated to be 30% (if I'm remembering correctly) of people with the autistic phenotype - some traits of autism but not enough for diagnosis, and there can be some overlap of traits with ADHD and giftedness too.

Justbecause19 - absolutely it's not straight forward, think that's why its driving me potty! No black or white in a case like this. Def was the social side the HV saw, he was tired, in a grumpy mood and just would not do anything for her that day. Thanks for your reply.

Lifeinthehills - thank you, I'm a born worrier which isn't helping lol! But I'm really trying to enjoy him for him as he's the most lovable, fun wee man too!

NeuoaWasabi - very true about all the misconceptions, think that's why I rhymed off all of that list and the reason I'm confused. At the same time the process for assessment has started and no matter the outcome I need to know to be able to support him as best possible. Thank you.

This was my child at the same age, although your child has a lot more positives than my son did at that age. He couldn't speak a word.
But your list of concerns were our concerns with the added no speech.

We started him in nursery, this made such a huge difference. They work so hard with him to help him.
SALT started, this has also been amazing.

We had his assessment last year, and, much to my surprise the consultant isn't highly concerned. And think it's very unlikely he's on the spectrum. If anything, very mildly.
He has now outgrown quite a lot of the concerns.
The flapping, because he's doing it when he's excited/happy this isn't classed as flapping or stimming, he said it's a behaviour some children just do when happy.
If they were to do it whilst nothing around them is happening then that would be a concern.
The positives out weigh the struggles I was told. And your son has a lot of positives.

I remember feeling like you did, I was so upset, not of what could be or if he was it was just the unknown. I done a lot of research and watched a lot of things and it helped a lot. As ignorantly I didn't realise how big the spectrum is and how it can vary so much.

Is your child in nursery? Could you put him in if not?
I found getting help from professionals has helped so much.
Even if he does get diagnosed it doesn't mean anything, it's the help that you have/need to get in place that makes the difference and the earlier the better.

Aww SunshineClouds1 thanks for your msg. It makes so much sense what your consultant said. He def seems to only jump and give a little flap when he's excited. I think thats where i was driving myself crackers trying to figure out if its just a happy reaction or a stim where he needs to jump.

Earlier we went to his first wee group where he could mix with other children, he saw 2 tiny babies and went over to look at them and said baby! Also glanced at any children beside him and also said hello unprovoked twice to children and responded to all adults.

He's not in nursery as I'm a SAHM but I'm going to make a massive effort now to get him to clubs, parks, groups anything with interaction and learning opportunities. I feel guilty that I may have hindered his development in this department by only being at home with his sister or visiting grandparents.

I'm glad to hear your little one has made great progress with his speech, I'm sure that's lovely to listen too.

Again that you for understanding and taking time to reply. Your msg has definitely helped alot! 🙂

He sounds very like my son at that age, and my son does have high functioning autism ( what was called aspergers)

My advice would be to get him into a very good nursery for some sessions. A very on the ball nursery teacher started raising the issue with the relevant people very early on, so he was diagnosed by 5, which is much earlier than most.

A health visitor will only get quick glimpses of a child a nursery teacher will observe over weeks.

Thank you Caramac555.
Just finding myself constantly watching, analysing, trying to put off wee signs maybe as other possibilities too, maybe slightly in denial.
I'm so cross at myself too as there's absolutely nothing wrong with having a child on the spectrum, he's the most precious, loving wee boy and he's all mine but I'm just scared life will be harder for him than it needs to be. At the same time it's my job to make sure he has the skills and capabilities to cope as best he can.
Time will tell I guess. Hope your son is doing well, I'm so glad you've had good people recognising signs and supporting a diagnosis for him.

I would try not to worry too much at this stage. There are lots of positives in your post and lots of NT children do show some autistic traits at this age. My dd is autistic but was diagnosed much older than your child. Try to enjoy your time together and see how things pan out.

Thank you BigBangSmallBang, that's what my husband keeps telling me. He just says he's 2! Leave him alone lol. It really is just stealing the joy from everything right now. I'm an overthinker, constant worrier and pessimistic kind of person however hard I try not too be, that's in every area of my life. You are so right though I should be enjoying him when he's little as I won't get this time back.
Hope your daughter is doing well 🙂

She is doing well thank you, her autism brings out so many fantastic traits, I wouldn’t change anything.

My ds1 had some characteristics that made us wonder about autism and it wasn't until he was older that they completed the 3di assessment. From that they diagnosed atypical autism as in some areas he reached the threshold but in other areas he didn't.

He is now completing 4 A'levels at a grammar school.

There have been some challenges and the diagnosis has been really useful.

Have you tried doing the MChat screening? It will give you an idea if there is a concern.
www.autismspeaks.org/screen-your-child

BigBangSmallBang - Brilliant, love to hear it.

Lorisparkle - I feel this way about my child, he has areas he's doing so well in that are typically red flags, and other areas I can see clear traits. Your son sounds like he is doing fantastic, I'm sure you are so proud of him.

Childminder mum - many thanks for the link, yes he's always come out at a score of 1 or 0 depending how absolutely particular I want to be.

Autism is diagnosed using ADOS which is play based, generally if his play presents typically he won't get an autism diagnosis. The test includes a pretend party with a doll and peek-a-boo. There are also a ton of questions for the parents to answer to go alongside the play to get a diagnosis.

He might be, might not. A lot of what you list is typical toddler behaviour. I would say no based on what you say, but the spectrum is huge and presents individually. DD struggles with basically the opposite of what your DS does, she doesn't have much speech or imaginative play but has never done any flapping/ repetitive movements etc. HV didn't pick up on any issues and I had her privately assessed at 2.9yrs and got the diagnosis.

Why was your HV appointment awful?

Whatever happens OP, a diagnosis won't change who your son is and he sounds like a super little lad. I agonised over analysing everything too. My DD is amazing and has some incredible skills and traits, she is amazing at art and has a very picture driven mind, I really am looking forward to seeing the person she is going to grow up to be!

If he turns out not to have asd, he won't get diagnosis and it won't affect his life. I he got a diagnosis but he had no difficulties then it won't affect his life.

I have met many people with ASD who all have different talents and challenges. I have met many people without a diagnosis who have lots of talents and challenges.

Ah megan2021 that's tipped me over the edge, the tears have started, he is a super wee man and he is so so loved. Your daughter sounds like an absolute delight too, everyone's child on this thread does which makes it less scary.

The day the HV came I had been playing with ds all morning to keep him occupied, tv was off etc, but she was about 40mins late and by this point he had had enough and needed a break so I put on the TV. When she came in she got straight to it and told me to turn off the TV. I obviously did and then she asked my son to hand her a toy, there was no hello, I'm......, getting down to his level for a few minutes before starting etc my son was like nope, don't wanna know, he was tired and ignored her, just got up on my knee. He then played with a wee tool set beside me and she asked him for the screwdriver, he didn't give it to her, i explained he didn't know the name of it as screwdriver, he just knew it was a tool for turning, she then ummmmed and ahhhed for ages which put me on edge and then she said she was worried about his communication and social skills. She asked me to ask him for something which I did and get went and got it and gave it to me straight away, he then got up on the sofa behind me and sang the ABC song from start to finish! She wanted to put him forward for assessment just incase and I've literally be ill ever since worrying! This was about November time last year. He's always been a jump with excitement and the odd hand flap kind of child, adored his jumperoo as baby too. But she never saw any of that on her visit, so god knows what she would have said then.

My head is just scrambled with everything. My husband has even suggested I see my own doctor as its getting to me that much. It's just the unknown, if a professional could just say yes or no I think I could say right ok, now I need to put things in place to help him in whatever areas need help etc.

Apologies for this ramble, I really, genuinely appreciate your reply and I've no doubt your daughter will grow even more amazing than she is now ❤️

Cansu this is very very true! There's not one of us without our struggles or challenges in life. I appreciate that dose of reality very much.
Thank you.

Haven't read all replay so sorry if repeating. I'm SEND teacher and have an ASD class- majority verbal, eye contact, able to read & write- these things are all 'normal' for some asd kids. I'd say your little one definitely has traits buy that doesn't mean he won't be affectionate, eye contact, emotions, be able to follow curriculum etc so please don't panic just keep an eye out for an issues- have a Google, lots of photos/ symbols/ zones of regulation etc may help going forwards.

Thank you Bronzeisthecolour, that's my aim from now on, to stop worrying about the signs etc and see the areas where he actually needs help. Things that a mum doesn't for her children regardless of any diagnosis of anything! 🙂

I think you should have told the HV that you were worried about HER social and communication skills - she doesn’t sound like she knows how to interact with children very well!

Starcircle you are so right!! She was an older HV, intimidating kind of woman! My son had the right idea, didn't want to talk to her anymore than me!

It varies from area to area but we saw a paediatrician before our son was referred to the pathway. I assume your hv can't refer straight to pathway so you will see someone specialist at some point. Any concerns will be flagged up then. Also assessment is completed by several professional over a few appointments. Your son won't be diagnosed unless he's nd. But regardless of outcome remember he's your child, perfect just as he is!