To ask parents of autistic children...?

[AlmostAWife]

*Name changed for this
When did you start to think they might be on the spectrum, and why?
What were your signs?

Thank you

Between 3 and 3 and a half. After I would have described DD as bubbly and very sociable I realised she didn't then grasp playing with peers at nursery. She started having panic attacks as we arrived to her Jo Jingles, toddler gym and in shops. One playgroup wanted an assessment but at the other they felt she was settled. It was slow as she was very chatty with us at home and went out with me. Huge shock when I grasped what professional s were thinking.

I was worried about my son almost from birth, began seriously looking into ASD when he was 12 months, took him round the houses for vision, hearing tests but was told 'wait and see' until he got to three. Then they started listening and he finally got his diagnosis a couple of weeks shy of his fourth birthday.

He's verbal but without a huge amount of functional language. That complicated things for a long time. The older he gets the more obvious the gap between him and his peers.

I knew from the age of around 2. Lack of speech, repetitive patterns of play, sensitivity to noise and texture, huge meltdowns, hitting head and a delay in just about everything.

At 3 ish.

No real speech. Words he did say were "odd". Odd syntax. Stress on wrong syllable. Wrongly pronounced.
Echolalia.
No pointing - he used my hand.
Obsessions: numbers/letters/telling the time (not all at once and luckily a lot of his obsessions came in very handy!).

Seen by paed at 4 and pronounced "not autistic - just a little slow" ( )

Went into primary not really saying much....

Dx of Aspergers at 7 (I think).

My son has ASD and was diagnosed at 4.5. We started to worry when he was 3 and it was obvious he couldn't interact with other children successfully. He started to push them over and mess up their stuff, which looked like being naughty, but was in fact an attempt to interact. He liked being chased, so if he did this stuff, the reaction he got was someone chasing him.

When we look back, it was obvious he was different from a really early age, but we thought he was just quirky. He developed speech at a normal rate; but what didn't come was expressive language. E.g. So he could name things and understand things, but couldn't say what was wrong with him when he was upset and didn't talk about anything to do with feelings. When I was pregnant with my second child, he took no interest in my bump - he was nearly 2 - and my friends with children the same age, who were also pregnant for the second time had a lot of interaction and interest from their child about their bump.

He didn't say mummy or daddy - Teletubby names came first! He never asked 'why' until he was 4, and then a very profound why question. He took things very literally. He wanted things done in a particular way and would get upset if they weren't - but he couldn't tell us what exactly it was he wanted, so it was trial and error to get it right and stop the meltdown. Back even further, he was obsessed by particular books and toys at a very early age - 8 months and he wanted the same book over and over again at bed time. He was precocious at reading - reading independently at the age of 3, the same books a year 1 would read. But it was because he was very logical and liked the shapes words made. He didn't like some noises - would cover his ears up every time he went into nursery. We didn't know why. He was obsessed by shapes, and by cars.

He was diagnosed with Autism Spectrum Disorder and is at the high functioning end of the autistic spectrum, although this doesn't mean it's mild. He's very autistic in fact. And also was later diagnosed with Tourette's and ADHD, which makes for one complex kid.

Aeroflotgirl yes! I hear you on the happy birthday issues. Even at four and lots of attempts to desensitise him, DS still can't bear happy birthday. OT thinks he might have unusually good pitch because he loves music, me singing on my own to him is also well tolerated.

DS was a quirky individual from the moment he was born. He was a very good baby, but turned into an intense toddler. He spoke early at 9 months, but all his words were objects, book,car, train etc not Muma or Dada. I became concerned because he was so different from other babies I met. I took him to the health visitor on several occasions, but they had no concerns. He hated playgroup and the other children there. He hated any singing or clapping games.

Things came to a head when he started school, and he was diagnosed with Aspergers, within a few months. Apparently he presents as a classic Asperger child. Very high IQ, but no social skills.

He is now 13 and a delightful, lovely boy, though young in behaviour for his years. He is very formal, as his social behaviour has been learnt and is not spontaneous. His peers consider him to be an oddball, but an amiable one.

I must point out lack of empathy is NOT a feature of ASD

I keep reading this on here.

My son is the youngest of 5 and I knew when I was pregnant something was amiss. By the time he was 8 months old I knew he was this 'thing' called autism that I'd heard about in a half page article in the Womans Own. It still took years though to get him a diagnosis due to where we live and there being no expertise. He was diagnosed aged 4 by the late Lorna Wing, one of the world authorities on autism, she told me she knew as soon as she set eyes on him. For my son there was no regression - nothing every really started to happen and he has a diagnosis of Classic Kanners Autism which means he exactly fits the bill for autism at the most severe end of the spectrum - autism as describe/termed by Kanner decades ago.

He didn't speak until he was 8 but when he did it was obvious he'd been soaking up information like a sponge. He's never been to school, I did home ed with him, and it was the best thing we could have ever done for him. He's still at home with us and over the last few years his mental health has deteriorated and he now requires 2 to 1 round the clock care. We have a team of 4 live in carers working with us but I still have him on my own, with people just a heartbeat away, for bedtime etc and early morning. I finish his day and start it. I also spend a lot of time with him during the day but the sad thing is that no one can ever be alone with him just in case.

And on top of his mental health issues that manifested about 4 years ago, it can happen to our loved ones, he also has a diagnosis of Tourettes.

My son is independent and cooks, cleans, does laundry, looks after his dog, goes out for meals to carefully rehearsed places, he was well travelled until recently and has been worldwide. He also works out with a personal trainer 3 times a week and he walks 4 kms daily as well as rowing the same on is rowing machine, and the same again on his cross trainer. He also swims 20 laps of our 60 foot pool every day. His sensory issues means that physical actively is a huge part of his day.

Our house was purpose built so we can have him at home, he is the youngest of 5 and he's an uncle 5 times over. He has a good life all things considered and is really well integrated into our community but its fair to say that the life he has is not what we had planned for him and we were on our way to making happen before he was hit with his mental health issues.

Someone way back said it was nicer to say Child with Autism and I'd just like to say that not everyone is bothered about the terms people use. It can be really hard keeping up with the latest term to use even as parent of a young man this age.

And just to add something about children liking singing - we used to sing instructions to our son as he responded to it way better than the spoken word. I know he wasn't unusual in this.

And he loves a good party. One of my favourite photos of him was when he as found at 1am flat out on a sofa in the garden having fallen asleep when waiting for more Samboosa to be made. His undies were sticking out over the top of his jeans and his brothers tease him about being the goody two shoes who got wasted on coke and had to be helped up to bed. He really has no idea as to whats going on when he gets teased but he loves it and goes along with it. Its beautiful.

Its my 4th grandchild's 1st birthday on Thursday and I was in the garden with my son just now asking him what he wanted at the party, he wants crisps, pepsi, chocolate, chicken drumstick and sausage rolls. I allowed him to have a sneaky pepsi, his second of the day, he's usually just allowed one, and he kind of new - ah this is kind of just between me and my mama so Im going to go along with how important this is and enjoy the moment. It was lovely. Just lovely.

We have 5DC,two of are children are autistic.DS(13) I knew by the time he was 18 months old.DD(7)from around the age of 2,she also has physical disability's so I was more focused on that with her.

Tankusian she has asked me for a party for her 8 birthday, thought I would never hear it

Singing instructions sounds like a brilliant idea. I think I'm going to try that. Everything is such a battle.

DD was totally non interactive until I started singing to her. Now she is very sociable.and loves people. It was like a miracle.

Hmm, interesting. I'm going to give it a go. I had her hearing tested a few months ago as I thought perhaps she couldn't hear me as I'm often completely ignored... her hearing is perfect

How old is she? Things can change so much. At 3-4 DD wouldn't acknowledge me at all. Now she is full on demanding of attention and responds to some instructions (she is 8)

Just read she is 4..that is young..don't despair :)

Singing is good. DS's first 'word' was EIEIO from Old Macdonald aged 3. It gave me hope he could verbalise and copy.

Mine was pretty well diagnosed by age 3 but I was told that was unusual and he was at the time the youngest statemented child in the largest LEA in the UK.

I was very very lucky. An ex teacher so I knew how to go about getting him the help, I guess. And also got an amazing consultant who got things moving and got him a place in a special needs nursery - he then went straight into a special unit, which was fantastic.

He was broadly diagnosed as "autistic" but didn't get a very specific diagnosis "atypical autism and severe developmental dyspraxia" til he was around 7. We were again lucky in that we lived two streets away from a specialist place that ran the tests and diagnosed.

The sociable bit doesn't surprise me. My son is now 21 and started uni this year. (So believe in your autistic kids! If someone had told me when he was that little 3 year old in his coat waiting for the bus to the special unit every morning, that one day he'd be going to university I would never have believed it). When he was at college he was way and above more popular than either of his non autistic brothers. He has a great social life and my son in the year below him tells me many of their mutual mates have no clue he's autistic.

He not only had no speech at 3 - whatsoever - he screamed and cried almost every hour he was conscious. He had no words.

When he was one, I was on a postgrad degree doing child development and we did every diagnostic and developmental test on him as I was the only student with a young child. He tested as 'normal' - across the board. He had 5 words. By the time he was 18 mths that was all gone. He didn't speak again til he was 5 or so.

My son was diagnosed at an early preparation unit at around 2. I was a young mum and handled it and his diagnosis terribly. I often cry and wish I could turn the clock back. He used to scream and whine loudly in a very high pitches voice, was violent and unhappy and I was a bad parent.
I really grew into being his mum over time. He is 18 next year.

She's always asking me questions, repeating over and over again. Even if I've answered it the first time. She just doesn't hear it. She also likes a lot of reassurance. For example she has a set routine for how we do certain and she's always reminding me of the next step, but it's more "can we do x next?" like we've never done it before.

My mind boggles with her sometimes .

But yes, plenty of time for her to change.

I also agree that autistic children children with autism can have empathy. My dd doesn't have a lot, but I didn't put it because I didn't think it was specific trait.

In fact she couldn't give two hoots about anyone else and their feelings at all, she doesn't process it at all.

With hindsight I saw signs in ds from weeks old, poor eye contact etc. I did wonder because it coincided with an article I read about spotting autism in really young babies. Then all seemed fine and I forgot about it. Then he wasn't developing any speech, none at all, no words at 18 months, only a couple at gone age two. I didn't want him to do his two year check with HV because I knew he wouldn't pass it, I felt he needed more time. Then he went to nursery and I knew he wasn't ready for that either but didn't understand why I felt that way. At nursery within weeks they had a developmental paediatrician in to do an informal assessment and the ball was rolling from there. By this time he had plenty do speech but it was all echolalia, reams and reams of Thomas the tank engine episodes but no communicative speech eg never asked for anything to eat or drink or said he was cold or hot. In fact aged 11 now I don't think he's ever told me that he's too hot or too cold.

Dd almost the same as above and I obviously knew straight away and didn't need school to tell me. I took her to the GP and asked for the necessary referrals myself.

More symptoms:-

Lining cars up but not playing with them.
Absolute terror at the noise from hand driers or vacuum cleaners.
No interest in other children at all.
Terrified of shower
Not answering when people spoke to him unless I promoted him to.
Good eye contact and empathy with me but no one else at all.
Refusal to sit down and join in at play group or library sing alongs or story time. Not engaged at all.
Fearful of anything that was Red.

I noticed with my dn at 4 months old. He was still very newborn, not really making eye contact or cooing and not using his hands, he was diagnosed at 3, when hv picked up on his trouble with potty training and communication.