highly likely autism diagnosis

[motherofakoalaboy]

i am just wanting a hand hold as i am going through so many emotions right now. koala boy turned two in april and we just had our 27 month health review. while filling in the form it was a shock in a lot of things how far behind he was. he scored a 135 which is way above the cut off where we would get support

in a lot of things he is very bright. he is brilliant at pattern recognition, labelling, knows the alphabet by name and phonetically, he can count up to 20, knows his animals, numbers, colours, shapes and fruits in english and mandarin. he is so bright and has a incredible memory

at the same time he struggles with emotional regulation, social language, has only this week started saying “i want x” after a lot a lot of coaching so he is evidently not picking up language intuitively and needs to be coached the phrases like “daddy/mummy up” etc. he is delayed in a lot of movements not because he can’t do it but i suspect sensory related that he needs a lot longer to build the confidence to do it.

then again we have had improvements and he is always progressing. this week he started to develop again so much. he asked for yogurt without seeing it and today apple. he does still get grumpy at times and frustrated when we try to expand “apple” to “daddy/mummy want apple please” but he is consistently showing progress. this week at soft play we had the best session yet. he actually climbed, he lasted for 90 minutes there, he did not have a absolute meltdown when dh told him “no” correcting him when he tried to take a toy off another boy. even last week ago we would have had to leave the soft play right away the meltdown would have been that bad. when i got us a cheese dip snack to he did something he never did before where he intentionally fed me a bread stick dipped in cheese. i thought he was just wanting to make a mess again (he does not eat dips and sauces and usually just draws on the table with it) but no he looked at me holding out the bread stick intentionally feeding me. he put the baby doll into the rocker. he did not play with it but he did at least say “baby bed” knowing this is where it goes which is again such a massive step for him.

i have friends on the spectrum who other then being a bit eccentric seem highly functional so in my mind had that image in mind and that bubble was very much burst by dh today being realistic. he pointed out the fact the signs are so strong this early on is a sign that while not on the severe end of the spectrum it is strong enough in him to be evident at a early age and the level 1 or high functioning level 2 would usually typically be diagnosed at a later age even adulthood. i have been absolutely breaking down into tears tonight as i have been in such complete denial i think.

problem is dh is suffering from anxiety right now too so in his mind can only picture the worst case scenario. i was hoping maybe to see if some people on here had their toddler diagnosed at two and what it is like for them now

OP, one of the reasons the Asperger diagnosis was absorbed into the wider autism diagnosis was that many of those with an early autism diagnosis were indistinguishable from those with Aspergers later on.

i think unfortunately the very bleak picture dh painted today has made my mind spiral that it has become the only thing i can see now

Bit of hand holding here, whatever the future holds autistic or not will bring challenges but it will also bring joy.

Anecdotally your 2 year old sounds similar to my son at this age, he's 14 now and was diagnosed a couple of years ago, yes he struggles sometimes with sensory issues and boy did we have a sharp learning curve catching meltdowns before they happened but he's exceptionally bright, just been accepted into college 2 years early and I generally a joy to be around (apart from repeating scripts from his favourite tv show at 11pm just as I'm trying to drift off.)

that is truly so lovely to hear. can i ask why he was not diagnosed earlier if he sounded similar to my two year old? was it just not flagged up? i think part of my worry is how young the signs are already so prevalent

What form is it?

My just turned 8 year old was showing very clear signs of autism at 2 years old and was referred for assessment at 3. She was diagnosed with autism without learning disability. Her paediatrician told me her diagnosis years ago would have been aspergers. So it is possible to be noticeably autistic at a young age and also be "high functioning".

ASQ-3 Questionnaire and ASQ:SE-2 (Social-Emotional). it’s the one that they do at 27 months

that was helpful to hear thank you so much for this

I'd try not to see it as bleak. My DS is autistic, he's 3 years older than yours but yours already has more advanced social communication than mine. He's in mainstream school and had a positive year in reception with extra support. Things are flagged early because of how important early intervention is but with the skills your DC has it's way too early to be thinking he is going to have a bleak future.

i had been still so positive about it all until dh in his anxiety told me what we could potentially looking at. i don’t blame dh for any of this feeling and he is feeling absolutely broken by it all.

Completely agree with this. Think of it as a significant difference in developmental profile, eg the numbers/Mandarin/limited language to get needs met, which is what you are noticing through that score etc and some additional support needs as a consequence of that difference rather than high score = huge impairment.

I think your DH is massively overreacting. Your son sounds like he's doing really well for 27 months.
(mum of an autistic child x)

Your DS doesn’t sound that far away to how my dd presented at the same age. She had a slight language delay, huge meltdowns with violence, sensory issues, sleep issues, but she was very smart. She still has issues with all of those now. But she’s a high functioning 6 year old now and is good at masking, gets on well at school and academically, has friends, does activities. She has some support at school and is now in the waiting list for assessment, it wasn’t picked up earlier.

I disagree with your DH that high functioning gets picked up at adulthood. It does at the moment because assessment in the 90s/before then was focused on the stereotypical lower functioning, but nowadays it’s picked up earlier. I was late diagnosed myself but have no doubt that if I was a child now I would be diagnosed as a young child, it was very obvious.

I'm not meaning to downplay your feelings because I know it's terrifying when you know your child is behind with things and then you start questioning is it autism etc. Your 2 year old sounds exceptionally gifted to me. I'd have been over the moon if my little one could do what yours is doing at 2. For reference, I've got an almost 4 year old who is basically non verbal and has a lot of sensory issues and will barely eat anything. He's currently waiting for pediatric appointment to sort an autism assessment. Honestly, your son is only 2, he sounds amazing so I wouldn't be so quick to label him when hes still got a lot of growing to do yet

thank you so much for all your replies. i really needed to hear these encouraging posts and also sending a massive hug to all who are going through similar. i think right now the scariest thing is not knowing and i let the picture dh painted imprint onto my mind.

he had a cancer scare a few years ago and the only way he could deal with it was to in his mind already assume the worst (he did not have cancer) but what i am saying is that because of his anxiety he is now looking for treatment for he needs to assume worst case to move forward

😔 dh upset feeling like he is the only being realistic. i keep saying we have no idea yet what end of the spectrum he will be on and is saying we (me and his family) are in denial that all these people we are mentioning were diagnosed later in life he can’t see ds developing more and i keep pointing out he is developing every week especially right now and there is no sign he is set to be on the more severe end

I'm just reading your OP again and a few things make me pause. Firstly, if he's 27 months, he's right in the middle of the age range (24-30 months) where children start to say 'I want X', so that's not concerning.

Secondly, have you actually been referred for an ASD assessment or been told he should have one, or are you assuming that's what the outcome will be?

It sounds like you're both highly anxious over his development and you're pushing him forwards.

Your little one sounds similar(ish) to my DD at that age. She was fine with her language development but behind on all motor skills. She’s now 9. She’s in mainstream school, meeting academic expectations fine even though she’s a summer birthday and only just had her autism diagnosis this year. She’s also dyspraxic which affects her motor development - she’s late to everything but is getting there bit by bit eg she can now swim 20 metres and we’re still working on bike riding and tying shoe laces).

She does find some social interactions difficult but understanding her needs has helped massively. Knowing about autism has hugely helped her self esteem. She’s quirky but hilarious, a bit like her dad tbh.

I won’t pretend I don’t worry about secondary school as she’s immature for her age and can get overwhelmed but there’s no reason to be unduly anxious about an ASD diagnosis and the earlier you know the better. I wish I’d trusted my instincts and pushed harder at every point before now. I knew there were differences but she was my eldest. Until we had our younger child we didn’t have anything to compare her development to really, and everyone kept saying it was fine.

we had the health review and are due a home visit. we will be likely getting support to help him with his needs as he did score so highly. we are still waiting for the home visit to be told what their plan with him will be. I have independently made a gp appointment with bupa to get a referral for the assessment. dh is completely falling apart over the prospects but it is hard to remain positive in all this. i have been unable to sleep as well because of all this. it just feels everything we had hoped for seems not so certain now. we certainly will unlikely have a second child like we wanted to. by the time we will have a clearer picture of everything we will be in our mid to late 40s so far too old to have a second.

Yes, totally agree with the last post.

In the 80s/90s assessment was only pursued for people who were non verbal, unable to attend mainstream etc. No way my DD would have even been considered (or a parent would have even thought of asking for it) back then. There was a girl in my primary class who in retrospect was definitely autistic. No accommodative changes were made for her. She had a rough time. That situation simply wouldn’t happen now. We all know more and expect more, rightly.

He is doing far better than my four year old who is autistic.

If it is any consolation my son is still only saying single words at four and has just been diagnosed. I am gently telling you to get a bit of perspective that it could be worse. At least he speaks.

Just pause a second op. He is very young.
My friends son seemed quite behind at his 2 year health check. He was very late walking & talking, didnt seem to play like peers and ws quite sensory seeking. she got referred for extra checks etc. The consultant she saw was quite pragmatic & said watch & wait a bit, and she was given some advice on encouraging him to move/communicate.

Hes now a completely normal 10 year old. He was just a bit of a late bloomer! hes now an exceptionally fast runner & good at sport, does well at school. Gets on well with friends and is a happy, well behaved boy.

A lot of parenting (for everyone, not just ND children) is going through a process of letting go of your own expectations of what being a parent will be like and learning to be the best parent you can to the child you actually have.

Both my children (one ND, one not) have severe food allergies. Children’s parties, holidays, summer picnics etc are nothing like I hoped. Sometimes I feel upset and angry about the extra anxiety I have to carry and the amount mental load that comes with it. But absolutely every parent is carrying a version of this about something. Maybe they imagined having a sporty child and they don’t, or an academic one and their child is more practical. Some families struggle to accept an lgbt teenager.

Ultimately, a diagnosis doesn’t actually change anything at all. You are still parenting the same beautiful child you were yesterday. And you are still the best possible parent for them. Meet them where they are xxxx

Is your DH potentially autistic? There’s a strong genetic component and anxiety / catastrophic thinking can be signs.