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

My DD is sociable OP but only on her terms. So she's friendly with family members and her friends at school but completely blanks other people. She's also very generous (again only on her terms) and can be caring to her little brother.

I've thought it since DS was about a year old I thought I was either mad over thinking and its what toddlers are like but he hasn't progressed from that and only now have we been referred he's 3.2 and I waited to see if preschool raised concerns and they did. And now I think about it he's been the same since he was about 4/5 months but I thought he was a fussy baby.

We started to notice with dd when she was about 18 months and started the diagnosing process when she was 2 she is now 4 and has recently been diagnosed with autism and sensory processing disorder. One thing do not be fobbed off we took dd to gp to raise our concerns and were told oh she's fine she looked at me! Thank god we didn't just take their opinion. If you have a childrens centre near you they usually have a special needs outreach worker. It might be worth contacting them ours was invaluable and has helped us so much throughout the process.

He was my first, but I had an idea he might be harder work than friend's kids. He didn't point, reversed pro nouns, seemed to not differentiate between me and him, liked routine played repetitively, no interest in other kids beyond hello, restricted diet. I took my concerns to the hv written down when there was the option for 3 years check. First he was referred for speech therapy, they said they couldnt help but wouldnt say why, eventually gp referred to paed who dx asd at 4.However, hehad great eye contact, smiled and laughed lots, slept well.I think fil would get some kind of dx now.

Hans that also describes my 4yo dd. She refuses to acknowledge strangers or people she doesn't know well. If someone asks her a question she looks to the floor and ignores them. But family and friends she's sociable with.

OP my dd was about 15/18 months when I thought there wasn't something quite right. She was speaking in sentences, her language was outstanding and she couldn't stand any change to her routine. She'd have horrendous tantrums which she still has now between 5 to 10 a day.

She loves to spin and is clumsy as anything. Think falling over every single day and smashing her face, mainly her teeth on whatever she hits on the way down. Both her front teeth are wonky and hanging on by a thread from being banged so often. She eats with her fingers as she doesn't have the coordination to eat with a spoon or fork, but hates the mess so wipes them rigorously between each mouthful.

Her chewing is also extreme and she has other sensory issues.

But as a pp said, girls do present differently to boys. No one at my dd's school think there's anything wrong, she's 'fine' apparently.

We don't have a diagnosis yet but hopefully will have in the next few years.

Good luck and follow your instinct.

Oh yes, dd doesn't really point either, she never asks for anything just screams at me. She has the language to ask, she just can't unless prompted by me.

I remember googling youtube videos of autistic toddlers at 14 months so by then I must have suspected for a while. I remember listing my concerns - off the top of my head:

• obsessed with spinning
• anxious around other people - didn't like people talking/cooing at him as a baby
• no pointing at 12 months
• used my hand to get what he wanted as opposed to point/talk
• non-verbal, no babbling
• flapped hands when excited/anxious
• got really distressed at birthday parties, covered his ears, would try and escape, meltdowns.
• high needs as a baby, lack of sleep

I remember googling obsessively trying to find similar traits but as you mentioned all children present differently so it was hard to get an answer. Also, girls can present very differently and from what I've read tend to cover it up well as they're better at behaving in a way which is expected of them (although it still doesn't come naturally iyswim)

Raised my concerns with HV who fobbed me off until he was 19 months as he was still so young at that age. When she observed him at 19 months she told me he was a happy little boy and boys develop slower than girls, I shouldn't compare blah blah blah. I refused to let it lie as I knew in my gut 'something' wasn't quite right. I did the M-Chat test mentioned above (you can google it) and that confirmed my concerns - kept badgering the HV/GP until they got fed up of me and referred him just to shut me up.

I started ABA therapy with him at 22 months - he wasn't actually diagnosed until 28 months but I wasn't going to wait around for them to tell me what I already knew. He was diagnosed with classic autism at the moderate/severe end.

ABA saved my son. He is now 5 and in reception at a mainstream school with no support. His teachers can't believe he's on the spectrum and he's doing brilliantly. I think he'll always have his quirks but he can now function in the real world with limited support and will hopefully go on to live a happy and independent life.

I would listen to your gut. You can still research therapies and start them before getting an official diagnosis. They are not harmful and if your kid is absolutely fine then you've not really lost much. But these early years are so important for development - it makes me so angry that in this country we adopt a 'wait and see' approach. All these kids being diagnosed years later are missing out on crucial early intervention. Go with your gut. Over the years I've really lost faith in the system and these so-called 'professionals'. No-one knows your kid as well as you do and these concerns and obsessive researching are your gut telling you something isn't quite right. I was exactly the same - searching for evidence that he was ok or evidence that he was autistic. It was the worst time. Once I started the therapy and felt like I was doing something and could see his behaviour improving I started to feel much better. Good luck

Whether she has autism or not is sounds like she seeks sensory input like deep pressure and there are things you could do now to help like weighted lap mat or pressure vest or just Playing games like rolling her up tight in a duvet and gently squashing or rolling a physio ball over her. Look at sensory processing disorder for ideas. www.amazon.co.uk/gp/aw/d/0399532714/ref=mp_s_a_1_3?qid=1416151097&sr=1-3&pi=AC_SY200_QL40

DS was always slightly behind with his physical development. Didn't walk til 18 months, didn't talk til 14 months and had a little bit of speech regression which coincided with a hospital stay.
From the age he could sit up unaided (8 months ish) he used to sit in front of the cupboard and empty is out and put everything back again.
Then when he went to nursery at 18months he used to take all of the books off the shelf and put them back on again repeatedly. He also used to like building a tower and knocking it down over and over again.
He wasn't really bothered about other children. He was a very placid baby but an absolute nightmare from the age of 3 with tantrums and being argumentative and challenging behaviour. He wasn't too bad at nursery or at the childminders but as soon as he started school all hell broke loose and it's been that way every since!
He was diagnosed at the age of 6. He is bright and now goes to a specialist school for children with autism after spending 5 years in mainstream with full time 1:1.
The whole process for getting diagnosis is very lengthy so it's always worth getting in the system as soon as you can.

Exactly the same as HansKristoffAnnaSven except dd was 8 when diagnosed and it was her year 3 teacher who raised it. Now when I read about other children with Autism and the signs that were there I wish I'd realised and recognised it so much earlier. We just thought it was the way she was and adapted accordingly.

Even though DSD had been nothing like that and when dd2 came along she was nothing like that either. We knew she was different and thought perhaps maybe there was something but never thought we'd be taken seriously by professionals. It was such a relief when her teacher raised it.

I knew DD1 was a bit unusual from birth. She was attached to me every waking and sleeping moment as a baby, could speak in sentences on her first birthday, preferred puzzles and adult conversation to toys as a toddler and taught herself to read at 2YO.

I didn't understand why preschool and school were such noisy, chaotic environments and didn't realise they were right for most children. It was just mine who found the overwhelming.

Through primary and middle school she was just a bright, sensitive child who was apparently a pleasure to teach but chose not to go into the playground. She didn't really like change, e.g. new people, going on holiday.

She fell apart completely the day after she started high school.

I had no idea she had AS until I was invited by her CAMHS psychologist to give a developmental history and gradually realised that I was painting a picture of Autism. He explained AS to me and I went home (in shock) and read more. Reading was like being handed missing pieces of a jigsaw. Suddenly all her behaviour over the years made sense.

Shortly after this I began to recognise AS in her 7YO sister who was assessed and diagnosed a year later.

If I'd known how subtly AS can present, I would no doubt have recognised the signs a lot earlier and saved our family a lot of heartache.

Fanjo, I've never heard speech regression described as vividly as you did. Thank you. I think the professionals can/could learn so much from parents, those who are in the trenches.

DS was our first so to use we didn't really know anything, but it was observed that he flapped a lot at his speech therapy session (we assumed he was just slow in speech) so this led to looking at his other behaviour which ticked some boxes - although with routine he is very easy going and able to adapt easily. He was about 4 when he was properly diagnosed, but was about 18 months when someone first suggested it to us.

DD2 is now 3 and we have some feeling that she could be on the autistic spectrum. She hates change in routine (everything has to be just right), lines up toys, slow speech (didn't speak a word at nursery for a few months), little bit of flapping (not as much as DS though). We did start the ball rolling by seeing a speech therapist about her who came into nursery a couple of times, but she just said that she was a little delayed and now DD2 is chatting at nursery the speech therapist has pulled out so Im not sure where to go from here to be honest.

The thing that stands out for me the most was the spinning and eye contact and lining everything up.

I knew something wasn't quite as it should be from about 12/13 weeks with all of mine but all 5 got dx at between 5-9 they are quite a lot older now so I've forgotten lots about differences as little ones but I have a 2yo and just 1yo who are being just as unusual and rather off on things in comparison to other children but unfortunately have a HV whose obsessed with learned behaviour (not quite sure how the tinys learn stuff like that from almost adults who are hardly ever about but there you go).

My dd now 7, was an Autistic baby, I am sure. She was unlike my other friends babies, who are calm and happy. She was always highly strung, crying from 9am-9pm ever day. She would have mealtdowns. The defining factor came on her first birthday, we had family around and we were singing happy birthday, and she just screamed and screamed like she was really scared. Even now she does not like happy birthday routine. Ds 2.10 years loves it. As she went into toddler stage, she was emotionally detached from her peers, locked into her own world. Virtually no eye contact, and would find certain situations extremely distressing. As she was not able to speak well, she coulden't tell me what was wrong so this made it worse.

She was dx with ASD after her 6th birthday, and was in an Autistic school before then. She has come on leaps and bounds, her speech is like NT childrens, her behaviours have reduced significantly though she does find certain new situations hard, she is able to cope much better now. As she has gotten older, and understands the world is not such a scary place, and is able to articulate her feelings, which I thing helps significantly.

Yes the stimming, flapping, spinning, hands on ears. Putting everything in her mouth.

I was absolutely convinced DS1 was somewhere on the spectrum when he was a toddler and it didn't really go away until he was around 9.

He was very late to speak, and like OP's DD would only use new words once he knew they were right, was the same with anything new, would watch and watch but wouldn't try until he was sure he could get it right. Would never join in at parties.

He was obsessive about things like cupboard doors being left open and really needed a routine to his day/week. Surprises were a big no no.

Although he could play with other children from around 4/5, he didn't really have any friends until he was 7/8.

Then he seemed to grow out of it. By 9 he was part of a really close knit group of 6/7 friends and now at 13 he never closes a cupboard! He still does best with firm rules and routine and he's not keen to try new things. Eye contact can be difficult for him too but he generally copes pretty well with life, has a great bunch of friends (some of who do have autism) but has never had any diagnosis.

I wrote to my GP, setting out my concerns because I didn't want to talk about all DS1's "failings" in from of him. GP telephoned me and arranged a referral to a paediatrician who said he was a special one but that there was no cause for concern. She turned out to be right, I think.

With DD I started to see there was a problem around 2 (although with hindsight there were signs from day 1). She had an intensity about her which was so different from her peers. Basically she would focus on her chosen activity to the exclusion of everything and everyone else. Interferance with that focus lead to meltdowns of monumental proportions. Nobody listened to me for years though and she wasn't diagnosed until she was 15.

By the way I think 'autistic child/person' is far nicer than 'person with autism'. I am autistic myself and find the second one patronising and insulting, as if being autistic is something to be ashamed of and which needs distancing from.

At a year old, went from being a very happy, very sociable child with all no problems with any of her milestones to a child that lost the few words she had and never approached another child for about 2 years.
She has is still very happy at 15 years old with some speech, very gentle and to this day has never so much as pushed or hurt anyone.

From pre-school age, we knew he was different from our other three children, but thought it was a developmental thing where he would catch up with the social and behavioural stuff.

When he was 7, the school SENCo gently suggested a paediatric assessment. He was diagnosed with ADHD and started taking methylphenidate. Once the ADHD was treated, the ASD was more noticeable and he was diagnosed with that aged 9.

Late to speak (but only just, you know, reaching the absolute minimum number of words expected by any given age, therefore making the professionals think she was just a slower bloomer than most).

Not interested in peers from a very young age. Other children wanted to smile at each other, play alongside etc, she just scowled at other children and did not want to share anything with anyone (was put down to her personality by anyone I commented to about it).

Preschool finally noticed she never really grew out of the playing alongside stage, she never had much shared imagination, whereas all the other little girls were roleplaying at every opportunity. She also referred to herself as "you". Still told by professionals she would likely grow out of it.

Now, in reception, she is just different, and the teacher notices it. She still struggles with shared imagination play, and her social communication skills are clumsy at best. She does not read people or social situations well at all, and can be behave oddly as a result. As she is only 4, it is not tooooo obvious to her "friends" so she still has some at the moment. Not so sure this will last though.

I thought she was different from about 12 months, for all of the above reasons, but have oscillated between being very sure she is autistic, and thinking, no, she will out grow it all and be fine.

I am in the diagnostic process, but I think it might take a while for her to be given a diagnosis. She does not seem to have any of the fixed patterns of thinking that are required for a diagnosis. No issue with routine change, no repetitive actions or play, no obsessions. She could just have sensory processing and social communication disorders rather than a full diagnosis of autism. I will have to wait and see.

About 9 months. She just didn't seem very social, didn't wave or make many sounds or respond much. She didn't like being touched and so on. I knew something was wrong and she was different (actually I knew this when she was about 4 days old). She didn't say a single word ,not even dada or mama.
She was diagnosed when she was 2 and 1/2 years old, lets just say I wasn't surprised at all.

Hope it's ok for me to post, ds isn't autistic but I thought he might be until he was about 4.

He definitely fitted a highly sensitive high needs profile.
He barely slept as a baby / toddler but would scream and scream instead as overtired but unable to sooth.
Funny with textures and tastes (still is)
Barely played with toys, used to tear paper instead.
Late to point, late to wave
Easily overstimulated
Didn't sleep through the night until 4 and a half. Until then up 6-8 times.

BUT he is now 5 and a half and the last year he's really changed. He still has issues around textures and tastes and some sounds but he's incredibly outgoing and very very verbal. I will say this had never really been a worry. He's bright and has excellent empathy with others.

So I don't know...I felt early on there was something not quite as it should be but my worries seem to have been unfounded.