How early did you know your child had autism?

[TheLoneWolfDies]

Ds is 6 months, I have always been concerned, since I got pregnant, that he may have ASD as my brother has it and so does my uncle.

He makes eye contact, babbles, responds to his name most of the time, cries for me and DP if an unknown person holds him, is smiling since 3 weeks and laughing since hust before 3 months. He can roll and sit independantly.

However, when in his highchair or on my lap he bangs his head back quite a lot, he hand flaps and pulls his hair and I'm just mildly concerned incase these are early signs.

So when did you know and what were the first things you noticed?

Still on the hospital ward, when my daughter was less than a day old, I took her out of the cot and lay her on my bed. I stroked her face for some time, following the direction of her downy hair and she made something that sounded similar to a cat's purr. She was my first but I knew that was unusual.

When she was 5 months old, I stood at the door waving my visitors off. They called her name several times and reached out to her. She ignored them and showed a fascination for the Yale lock. I suspected then because she wasn't babbling either.

I was due to return to work shortly, so took her to the clinic and explained that she wasn't babbling yet and that I suspected autism. This was in the early nineties. They said that she was still quite young but to bring her back at 6 months. I did and they referred her straight away. And thus began our journey.

The best explanation I've heard for regression is that a child with ASD starts learning social skills and suddenly gets lots of social interaction in return. Which they don't want so they stop displaying those skills.

I always felt very alone with my son, he had an eerie calm from birth and didn't appear to want anything from me.

He started the diagnosis process just before he turned two and had his diagnosis at 2 1/2 years. We started googling 'reg flags' when he was 12 months, although I commented to dh that he had 'autistic hands' at 6 months.

Always 'something' in the back of my mind that 'something' wasn't quite right with ds from a very early age.

He was probably about 15-18 months when asd started to spring to mind.

Was about 3 when I was certain.

Was 12 when every finally also accepted something else was amiss as well as asd (dx at 10).

Now going through genetics

I knew for definite by the time he was 7, my SIL said she could tell much earlier that DS was autistic. We only got a diagnosis when he was 9.5, it took nearly a year to get a referral, school were totally unsupportive even when I finally took in a letter of diagnosis, the teacher threw it in the bin & refused to even look at it. If your child is diagnosed, you will find that you have to fight for every smallest thing your child needs, schools make any excuse to avoid giving you what you are asking for & even when you get it, they remove support without warning.

Diagnosed last month, when DD was 10.5. She's my eldest and I didn't really know that she was struggling till a friend commented whwn she was 8 that she was very like her DD, who was diagnosed at 14.

I was so sure that my daughter had "something". She screamed and screamed and screamed for a very long time. Someone upthread said their child screamed for 14 hours straight one day - my daughter screamed for longer than that most days for the first year, and well beyond that she was having full on meltdowns most days. She refused to feed as a baby and refused to eat any solids whatsoever till she was well past a year. She never ever smiled. She did not play with toys. No eye contact and rarely responded to her name. However she was an early talker (full sentences at about 15 months, speech was very clear right from the start and, weirdly, very good grammar very early). But refused to talk during screaming sessions and we rarely knew what she was screaming about. Several people suggested pathological demand avoidance syndrome. Motor skills were also early or average. We never had the stage where they teeter around and fall on their arse, one day aged about 11 months she just got up and walked and that was that. She was born as strong as an ox with amazing neck/head control.

Gradually the screaming stopped, the meltdowns stopped, it all got easier. She's now 4.5 and presents as pretty NT. She's not really into imaginative play as much as others her age but does like lego and drawing/colouring in or anything creative. She's sociable and makes friends easily. I would say she's quite laid back and much easier than most of my friends' children the same age. She doesn't tick any ASD boxes really and her preschool have no concerns. And yet I do wonder because of how she was when she was younger if this will all change again over the next few years.

She is extremely articulate though, her speech is not really like that of a 4 year old at all, it's really obvious when she's somewhere like a birthday party among lots of others her age. Generally people take her for older. I don't know if this is an ASD indicator.

The best explanation I've heard for regression is that a child with ASD starts learning social skills and suddenly gets lots of social interaction in return. Which they don't want so they stop displaying those skills

That's very interesting and would definatly make a lot of sense.

This thread has been very helpful, I love learning about peoples experience with ASD as it helps me to understand my brother more, I've always been facinated by it since myself and DB have always been very close.

I think my concerns with DS are justified in that I have always known he may have it as its in the family. However I think I need to step back a bit and just wait and see, atm he seems to be progressing fine.

Still enjoying the responces though and hoping the discussion keeps going as its been very informative.

Responses*

MrsBobDylan DS also had an eerie calm. He was so calm, I'd forget he was in the room. I'm a very quiet person, so it wasn't really a flag but DH and I both noticed it.

I'm curious. What do you mean by autistic hands? Physical appearance or how they slip out of your grasp easily?

Sorry. Bold fail.

@janmeyer i know enough about autism to know that my brother almost certainly has it and he agrees.
But thanks for dismissing my family's reality as an unhelpful stereotype. 😑

@janmeyer, im not sure what you think autism is 🤔
My brother and at least 2 of my cousins all in their forties have never received any support and have all struggled at points in their lives.

Dont know what you think qualifies you to dismiss my family's prevalent autism as "merely perpetuating unhelpful stereotypes".

The nerve.

im not sure what you think autism is 🤔
My brother and at least 2 of my cousins all in their forties have never received any support and have all struggled at points in their lives.

I know exactly what autism is thanks, given that I have Aspergers. And there's a bit more to it than just being socially awkward.
What I said about the engineer stereotype was based not only on your post but on many I've seen on here over the past few years. Maybe you have a real reason based in fact to think your brother is autistic, but there are plenty more that don't.

Like I said in my post, you have people jumping to conclusions based simply on the fact their relative isn't sociable and fits what people see as stereotypically autistic behaviours. Which results in people making statements like "oh I'm sure my brother is mildly autistic" or is "high functioning on the spectrum."
Because there are plenty of idiots out there who really do think Aspergers is basically being a little bit quirky, socially awkward and a computer genius.

I know what it is and it is not just how you are. You not only do not have some monopoly on the subject but you are mistaking your own profile for being the ambassador for autism or even.

I have read every fucking thing i could lay my hands on before my son was 3.

A lot of people with a chikd with autism have not and they mistake being an expert on their child with being an expert on autism.

I am not doing that. I know that every person with autism is different.

The engineer "stereotype" you are so quick to dismiss does exist however and you are very ignorant to dismiss it because it doesnt match YOU.

My brother is not the same as my son but it is obvious to me (being very close in age) that my brother had more issues than my son.

To have a diagnosis in yr late 40s is not common but dont just fucking dismiss it out of hand like somebody made you the ambassador for autism.

Geez.

I knew around 13 months.
Diagnosed at 27 months.
(LFA with SLD).

And @janmeyer being the sister to my brother was not easy so it just makes me see red to have my experience, my reality, his reality, dismissed as a stereotype because it doesnt fit your own narrative of choice.

My brother is he type of employee thorkil sanne would seek to recruit and he would be a great asset but he was not an easy brother and i was raised not to ever put another demand on my parents. They had enough on their plate and i had to be normal. You have no comprehension of what you so merrily dismiss as "mere stereotype".

I am finding this thread helpful, thanks for starting OP.
I do hope it isn't derailed - many threads on ASD end up becoming an argument between autistic vs neurotypical posters and that would be a shame in this case to all.
If anyone on here has any experience with getting a diagnosis from Tameside LEA I would love to hear from you - on here or by PM whichever you prefer, it would be really appreciated. Thank you

We had suspicions from 18 months, but dd only got diagnosed last week at 10yo. She compensated remarkably well until she suffered an injury and then it all just tumbled out at once.

Duchess
I fear I might be bringing up siblings the same way. I am struggling for 1-1 with them all atm. What could your parents have done to make your life easier - would acknowledgement that you weren't having it easy yourself have made a difference or was it the burden of walking on eggshells or them having different expectations of you all the time? Any insights helpful, I am trying to be a better parent to all my kids but I suspect I put more pressure on my neurotypical daughters than my atypical son. I just want to be fairer.

@TheVanguardSix The calm thing is weird isn't it? At the time I was just very pleased to be getting lots of rest with a newborn, but I did always feel somewhat redundant! DS was utterly beautiful but when I picked him up he was unhappy unless he was facing away from my body. I also sometimes forgot he was in the house with me, which used to make me feel very guilty. Now he is verbal he just says 'you can go now' so it is a lot easier for us both!

I should have been clearer about 'autistic hands' - he was in his car seat and the sun was shining into the car. DS was 6 months and lifting his hands up and twirling them in the light while watching them intently. He just looked very autistic at that moment but I never for one moment thought he actually was.

Before I had children I watched a documentary on very bright children with autism. I said to my husband that I didn't think I could cope if my dc had autism because of the way it can affect the bond. It has indeed been the thing I have struggled with, mainly because ds doesn't like to be touched or comforted. However, he is 9 now and I think we have a pretty good relationship. We have a laugh together and enjoys a good 'squash' session where he squeezes under a blanket that I wrap tightly around him. He is pretty brilliant.

@flatwhite For my son my first concerns are recorded in his red book at six weeks old. Of course I didn't know it was autism I just knew he wasn't like my older children and there was something wrong. At six weeks the HV wrote "Mother concerned baby unlike her older children as babies, very rigid when held, screams rather than cries, prefers to be in bouncy chair and looks for lights"
My daughter came along eight years later, I was determined I wouldn't look too hard for signs of autism and I would just enjoy her. Dd was the complete opposite of ds very content, rarely cried in fact had to buy a monitor because she would lie awake for hours in her cot without making a sound. She did rub the skin off of her ankles at six weeks because she rubbed them repeatedly on her pram which reminded me of ds who used to rub his hand against the pram top but I was determined to enjoy her so pushed it to the back of my mind and made sure her feet were always well covered.
Dd smiled rarely, and was very quiet, not only did she not cry she didn't vocalise much either. On two occasions I had someone say they thought I was carrying or pushing round a doll because she didn't nestle into me and she didn't move in the pushchair would sit quiet and looking straight ahead.
At four months I took her to her photoshoot, me her dad, the photographer and his assistant spent one hour trying to get her to smile. She didn't the only time her expression changed was when the assistant found a tigger keyring and waved it in front of her. She had a tigger on her mobile at home. I realised then that I was concerned.
Dd never had those special smiles for me or her dad or her siblings. I had driving lessons and she would stay with my friend. I would come back and their was no recognition on her face she was as content with my friend as she was with me.
At her eight month check I saw how different she was compared to the other babies there, they were moving, whinging, laughing, demanding dd sat, silent.
She did make all her milestones, she had first words but they were atypical so she said door (she liked to see doors open and close), where (because I was trying to encourage her to point so would say "Where's daddy, teddy, juice, etc" she never got the objects just the where) hair (but only on a particular fimble she could never generalise) and square (she could identify a square from any other geometric shape at 9 months)
She was incredibly passive so if you sat her in one spot she would stay there she never explored wasn't interested and never gestured to ask for anything.
Like ds I knew she wasn't typical from early on and having had ds diagnosed at two and a half I knew it was autism again. I'm not so certain if they would have been so quickly noticed as I had had children before for comparison. I imagine ds would have been considered a high needs baby and dd would have been considered an easy baby instead.

Yes, just acknowledging that they ecpected more of me, admitting that i was pressured in to capitulating whenever my needs were at odds with his.. instead they wanted to believe that they were treating us equally (because that is right in a perfect world!)
So if they had told that they were asking more of me because i didnt react so obviously/externally, then i would have felt less gaslit.

But they knew my brother was different but they had no label. They tried to make our family normal by raising me to give in/people please/anticipate his moods/calm him.

Not their fault. They had no idea of the impact it woyld have on me.

I remember teachers trying to get me to calm/soothe/reassure/persuade my brother when i was in primary school.

When teachers at my son's school asked if calling his sister to come and be near him when he had a 'meltdown' at school, i said no.
I wanted it to NOT be her responsibility to make him be neurotypical at school when she is already making concessions at home.

And yeh ev3n with my childhood under my belt i do it too. Less than my parents though and i know what im doing

Ps rage, yeh, i guess my daughter has my 'blessing' to fight her corner with her brother even if the explosion is massive. I do at the same time persuade her to pick her battles. So the reality is that there is pressure on her. But hopefully the awareness will help her to not internalise a message of pleasing (others)

Duchess I sent ds to a different school to his older sister because I knew that the school would use her as ds's carer because she could interpret him so very well. I believed dd needed space to be herself and I like to think it worked. Certainly schools never realised she had a younger brother until she was in sixth form at an inter school maths competition and a teacher there recognised her name and asked if she was ds's sister.

It's hard duchess - On the one hand, my eldest DD has skills many of her peers don't. Their class had a visit from kiddies from an SN Kinergarten. Her classmates and even teacher to some extent were clueless when one child had a meltdown whereas she took it in her stride, took out the textured ball she had brought with her and de-escalated it. Teacher was really impressed and bought her lunch.
On the other hand, she shouldn't know how to do that as well as she can and should not have been placed in a carer role from time to time (she's 17 and looks after him for two hours on a Monday so I can take her younger sister to a hobby).
On top of that she does not want any children of her own ever as she says she is too selfish to make the sacrifices she might need to.
I feel guilty about that but other times, relieved that she won't feel social or biological pressure to have kids or buy into the myth of motherhood as she knows what the hard cliff face looks like when people aren't instagramming that they're blessed.
So she has negotiation skills and has empathy in spades and also has a strong sense of boundary but her sister and her capitulate to her brother far too much, as do I. That means she and I tend to take less shit from the neurotypical world but my youngest daughter (8) is a people-pleaser, avoids all confrontation at school, didn't stand up for herself with bullies until recently...it does make me wonder whether some of that is down to her relationship with db and my poor refereeing of it (in fairness to me, some of that is safeguarding, if I let them have at it, her fighting her corner might end like Battle Royale).