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

I didn't take it as aggressive. Just as joining the discussion.

I do think we should take the views of the autism community into account.

I wouldn't like to refer to them in a way they found upsetting or offensive.

I think I would just like to see a thread where people aren't being pulled up on their terminology within a few posts of the opening post.

The question that ds may be on the spectrum was first raised a couple of months after his third birthday. Tbh I didn't have a clue and the first I knew about it was when a health visitor came to my door after being informed by his crèche that there was a question mark over some of his behaviours. They seemed to have forgotten to actually mention these concerns to me so it was a huge shock when the hv turned up. Looking back I feel rather sorry for the hv as she had presumed the crèche would have spoken to me and I just went to pieces!

The concerns that were raised were due to his flapping, fear of loud noises, obsession with numbers and not really playing with other children.

He was dx about 6 months later.

OP, your comments about your DD liking to be held firmly reminded me of an autistic woman in USA who became well known because she could empathise with cows and revolutionised the way they were processed when arriving at an abattoir. She watched as they calmed down when held firmly in a contraption, and she built one for herself to use because she too felt calm when being pressed all over. Her programme is on you tube. It sounds like your DD might feel calm when being hugged or pressed too, you could try it when she feels anxious.

Agree with CariadsDarling

That's Temple Grandin, Golden, and she's written some interesting books.

I have known from very very early on that Ds is 'different', but we are still waiting for a dx which may never come as he is high functioning and masks a lot.

What I would say, OP, is that, after a LOT of reading and time spent on SN board here, the saying:

'If you have met one child with autism, you have met one child with autism'.

is very true, so the fact your child is v diff to your brother doesn't necessarily mean much.

Yes, there are 'pointers' (or lack of pointing, more commonly!) but each child is different.

The trouble with 'person with autism' is that it makes it sound like a disease, when many of us in the autistic community, think of it as a different kind of brain wiring

My son has autism/ADHD/dyspraxia.
Early signs were slow to walk and talk, lining up cars, little to no independent play, meltdowns about sensory things, explosive rages, bursts of activity where he doesn't seem to hear us try to calm him down. Poor eye contact at times.
No regression.
He's high functioning, very gregarious, outgoing, exceptional literacy (with v. Poor handwriting), struggles with maths (typical spiky educational profile), can perform on stage/assembly without any fear or embarrassment, highly sensitive at times and completely unable to understand things from other's perspectives at other times. He very occasionally hand flaps (only recognised he dis this recently).
I see ds's asd as part of him, some parts of it cause him problems, other parts are great. I'm trying to help him see the positives as well as helping him deal with the difficult bits.

I understand zzzz, but there are physical differences within the brain tgat an Autistic child has compared to one without. I think that's what people get at when they say tge brain is wired differently. If it here weren't these differences, the child wouldent have Autism.

Very young like one, ticking, meltdowns that went on for aggees, delayed speech etc

DS is Aspie.

He was absolutely fine developmentally - walked and talked early, was a clever little chap. He was actually spookily clever (taught himself to read at 3 yrs old etc) which was a bit of a sign I suppose, but he was my first child so wasnt looking out for 'signs'. He was always very highly strung, demanding, high maintenance, but I thought it was just his personality (to an extent, it IS just his personality ).

His differences became really apparent at 2.5 yrs old, when he started nursery. He played alone all the time, couldnt even remotely understand 'sharing' or 'turn taking' and constantly bit and hit other children and had epic meltdowns (nursery had to be evacuated in more than one occasion). Nursery workers made vague 'ASD' noises, but I wasnt sure if it was just his age and temperament. By 4 yrs old and in school nursery, it was obvious he wasnt coping with the environment at all. He scaled a 12 feet fence to escape from school, attacked teachers and children on a daily basis and was just completely stressed out whenever he was expected to socialise or conform.

He was diagnosed at 5 yrs old. By that stage we all knew, really. I had done shit loads of research and he had been seen by every bloody specialist and 'expert' going. He didnt actually go through ADOS or the formal autism screening. A Paed just met him a few times, looked through all his notes, talked to us and said 'I think its pretty clear he has Asperger's...and if you agree, I'll diagnose'.

He is now a lovely, quirky almost-10 yr old with a good understanding of his strengths and weaknesses and what autism means for him. He attends a specialist provision for high functioning autism within a mainstream school and has friends ( with ASD and NT) and is growing up to be a cracking kid.

Sorry zzzzzz you are losing me, are you saying autism is not a brain difference? When you say physical markers, do you mean the way people look?

Fully agree with the 'if you have jet a kid with autism...you have met A kid with autism'. All of his friends in the spectrum have different issues and needs and quirks. The common factor with all is that mainstream, 'normal' environments are stressful for them at times. Says more about the NT world then it does about them, really.

*met

Not my child but my niece. She was diagnosed deaf soon after birth and a lot of her developmental delays were put down to that. Heads were firmly buried in the sand even when at five years old her overall development was compared to an eleven month old baby. I suspected autism for a long time before she was diagnosed. Even now at eight my mum is convinced it's not autism because she makes eye contact and is affectionate. Her total lack of speech is, as far as she's concerned, because she's deaf. Then she decides she's not deaf because she appears to hear some sounds. She just had a massive delay in everything. Self stimmed constantly. Grunts constantly, major meltdowns, rocks back and forth, almost no communication. She was diagnosed at about five.

Sorry ZZZZ I disagree, in defining the causes of Autism, differences in the neurology and brain are highlighted. You cannot ignore it. Here is an extract from the NHS website highlighting this.

*Neurological factors

In people without conditions affecting the brain and nervous system (see below), medical theories and brain imaging studies carried out in people with ASD suggest that the connections between parts of the brain called the cerebral cortex, the amygdala and the limbic system may have become scrambled or ‘over connected’.
As a result, people with ASD may suddenly experience an extreme emotional response when seeing a trivial object or event. This may be a reason why people with ASD are fond of routines, as they have found a set pattern of behaviour that does not provoke an extreme emotional response. It may also explain why they often become very upset if that routine is suddenly broken.
This confusion of emotional responses may also explain why children with ASD are interested in topics that most children would find boring, such as train timetables or have altered or exaggerated responses to sensory stimulation such as tastes, sounds, noises, smells*

You are not comparing like with like. I believe my dd is Autistic because partly there are differences in the structure of her brain compared to children without Autism.

DS2 said no word until 3, struggled with making eye contact, would put toys in category, would sit and look at the oven clock for long periods of time. When first raised with specialists a lot of the tests/questions were around early signs of autism but it turned out to be something called Verbal Developmental Dyspraxia, accompanied by high ability in maths (which was not obvious before he started talking - but now gifted and talented in maths in year 3). He also had other behaviours that could have been misinterpreted as autism, such as hand flapping, putting toys in order of size, putting objects lined up.