Children on the spectrum....

[QueenofmyPrinces]

Can I ask what age your child was when you first started feeling that something just wasn’t ‘right’ and what led to you feeling like that?

Thank you.

When DS was approaching 2, I think. His behaviour just seemed more “extreme” than his peers. All toddlers throw tantrums, but DS would scream for more than an hour sometimes, and there was nothing we could have said or done to distract or placate him. He would be totally unreachable. And I knew it wasn’t frustration over being unable to communicate as his speech was actually very advanced. He had the “little professor” thing going on with precocious vocabulary and unusually formal speech patterns.

I spent the next 6 years swinging between thinking there was definitely something up, and that I was being neurotic and he was just a bit quirky and highly strung, until he was diagnosed recently at the age of 8.

DSis: her DS was diagnosed at 2 - not high functioning, what used to be Kanner

My DS: around 6 when his world fell apart in school, flagged up by nursery when he was about 3 - what used to be Asperger no cognitive impairment

Dd2 just turned 3 and dd4 just turned 5.

My ds seemed different from around 6 months old, late sitting, crawling, standing, walking. Didn't like feet being on carpet would lift feet off the floor when we stood him up supporting him which at the time I laughed and just thought he was an odd bod but now realise it was a sensory thing.

I said around his 1st birthday he had quite a few autism symptoms and then as he got older he was late to say any words, was very hyper didnt understand what I said so couldn't follow instructions, really fussy eater, tip toer from when he first started to walk, tantrums that were so bad I wouldn't believe that's what terrible twos were as I'd never seen a tantrum so extreme, it was by about age 20/21 months there was no denying it.

He was diagnosed at age 3.

When he started crawling.

With ds he would have been about one that I was sure he had autism but my concerns are recorded in his red book from him being six weeks old. He was formally diagnosed at just three but he was referred to as having autism by the paed from being 2.
With dd I suspected she had autism at 4 months, I knew when she was eight months and she was formally diagnosed around her second birthday.

flesh - what behaviours did your children have at such a young age that concerned you?

I waited until DD2 was 6 & DD1 8 before getting them both referred. In hindsight signs were there from birth with both. With DD2 I was waiting for a so called expert to pick something up. They never did, so at the end of year 1 I asked her teacher "at what stage do we start looking at other possibilities?" Her response was "that will be down to the new teacher in September" The new teacher being just qualified without any experience, so I decided to set the ball rolling myself by going to the GP & getting referred to CAMHS.

CAMHS were useless. DD1 dismissed as "just shy" & "DD2 was messed around for years because they simply couldn't figure it out. Plus school wilfully blocked my efforts because I'd gone behind their back. Took a house move after 5 years for DD2 to be dx at 12 & DD1 had to crash & burn at A levels before getting dx at 18. Bloody disgusting! I also realised that I have ADHD myself during the process & probably ASD, as does my ex, his entire family & mine too to a lesser degree. It is entirely a postcard lottery. If you live in East Sussex I strongly suggest you move or pay privately, or you'll get nowhere!

Well they were and still are like chalk and cheese and I have older children so a lot of my concerns were that they weren't like their siblings but for ds at six weeks, he screamed constantly and it was screaming rather than crying. He was stiff/rigid when held, he would always look at lights rather than faces. As he got older he'd rub the pram top, he didn't have special smiles for me, he looked for things that spun so would watch the washing machine or tumble dryer for a full cycle, later he would spin everything wheels on cars and prams. He was fifteen months when he could identify letters and numbers. He didn't say words but would shout numbers that had meanings to him so two meant he wanted a snack and 7 meant open the door and 3 meant he wanted to go out. He had long winded routines that couldn't be deviated from and the tantrums had to be seen to be believed on a bad day it was impossible to work out where one started and the other ended.
For dd at four months we went for a photo shoot, in one hour despite having four of us trying to get a smile she smiled once at a Tigger toy. She was often mistaken for a doll as she would sit perfectly still and silent and if she was picked up she would hold herself rigid. At eight months at the health clinic she was so different to the other dc there she sat quietly not moving and not interested. Her first words were "where, hair and square" she could consistently identify a square at ten months, she lost all her skills at twelve months and no longer spoke, smiled, laughed, clapped or waved.

Thank you flesh that’s really interesting. That’s fascinating about being able to identify letters and numbers so young, I can’t even imagine that. It sounds like you’ve had a very challenging time

I must add that dd2 wasn’t diagnosed til she was 7 and dd4 was 5. But I was relentless in pursuing a diagnosis despite everyone (including school) believing otherwise.

Upon reflection, I can see signs in dd2 being autistic from about 4-ish months and dd4 from about 14 months old.

Upon reflection, I can see signs in dd2 being autistic from about 4-ish months and dd4 from about 14 months old.

What were they doing?

Oldest child I noticed from 2 but wasn't diagnosed until 10. Youngest child preschool picked up on at 2 and was diagnosed at 6. Both high functioning.

ivy - what behaviours made you suspect something wasn’t right?

With my eldest he would have extreme reactions to things. Unexpected change of menu-he hid behind the bookcase crying. Started ukulele (these examples are at school)they had to call me in as he was sitting with his head in corner refusing to do anything. He struggled with sleep. He was lactose intolerant. He hated loud noises. He would throw chairs and hit at school. He had toiletting issues. He is very very clever about certain things particularly maths even at two years old. His eye contact has always been rubbish. I ended up working in the school to support him. Luckily new head recognised his issues immediately and backed us all to way to diagnosis.

With ds1 he was always ‘challenging’, terrible sleeper, delayed speech, did not point, no social interest, expected visitors to sit in exactly the same seat as they had weeks previously, did not get attention when he needed help just tried to sort it himself. We have video of him at 18months stacking his presents on a table. Refused to unwrap them until they were positioned ‘just so’ and made a funny noise when we tried to engage him. HV said ‘all toddlers appear autistic ‘, school said he was just immature, I was not firm enough with him, I was seeing autism in him because I work with autistic children, etc. I went to GP and saw paediatrician. Diagnosis at about 8 years.

With my youngest I think I buried my head in the sand a bit but he would never let anyone comfort him if he was upset like it would provoke an extreme reaction to try and comfort him. And he failed his communication test at preschool. Luckily by this point they were on the ball and recognised early that there was something going on. He was a very fussy baby. Both boys wouldn't nap or sleep well. Fussy eating. Not responding well to behaviour charts or usual parenting methods. Sorry for the essay replies!

He was like a robot baby. He was silent and passive, late to smile, late to laugh, didn't babble at all, first words were at 3 and they were ball, wheels, and bees. I used to joke wonderingly that I could dump him in the middle of the floor with some toys and go to work, and he would have still been there when I got back.

I used to sit on the floor with him to teach him to play with little cars, and he would get up and leave the room to repeatedly flush the toilet or squirt toothpaste into the sink. (Hv said "He's doing it for attention"!!!)

His eye contact has never been truly awful, and he is searingly bright so excelled at school when he started. I too went behind the school's back for a referral to CAAMHS, because they lost him on a trip to the library. He wandered off and simply never returned (he did this all the time and I had repeatedly warned them).

I have a photo of him, aged 5 or 6, sitting on the playhouse with a proud grin on his face. He had filled in all the 'tiles' on the roof with chalked sums.

Now at 15 he talks about Yu Gi Oh, robotics engineering, maths, and very little else. He's applied for a sixth form based on the very formal dress code. He's a complete nerd and I love him so much.

He's a complete nerd and I love him so much.

Just wanted to say this is a beautiful sentiment colditz. And so very relatable!

Dd2 from about 3-4 months had the most bizarre fear of most people apart from dh and myself. She’d scream like she was being tortoured when a stranger looked in the buggy. When I tried to stop breastfeeding at night around 7 months, again she’d start this bizarre tortured cry when I stopped feeding. She talked v early and in sentences quickly. She enjoyed being hugged and swung, but remained largely emotionally and physically distant. She only had a couple of friends and didn’t mix with anyone else. She started crawling and walking in the same month - 16 months.
Dd4 - always wanted to sit in my lap (doesn’t always understand boundaries) repeated tv lines from a young age and importantly, never made friends.