If this is Autism?

[Aswad]

I know every child develops at a different rate
I know not all Autistic children display the same traits
I know I should see a specialist (we’re on a waiting list) but I really need some answers, please!
My daughter is almost 2 and a half
Has never pointed
Doesn’t look where/when we point
Doesn’t speak (not even mama/dada)
Doesn’t imitate our actions eg clapping, waving, pointing
Doesn’t wave hi or bye
Was a late walker? started walking around 16months
Doesn’t answer to name, never has
Randomly laughs to herself!
Occasionally walks on tiptoes. Maybe one very couple of days for about 2/3 steps
Chews on clothes . Usually the collar
Puts things in mouth
Hates having teeth and hair brushed. Like HATES it
Is good with food I make so no issues around that. Not great at nursery though
Instead of pointing she’ll take me to what she wants e.g her cup of water. Will bring me what she wants occasionally eg iPad or a book
In nursery no parallel play, will only play by herself

Loves being read to. Will sit still if new book
Happy child so will laugh if you smile at her
Likes being chased but won’t attempt to chase us
Doesn’t shy away from affection. Loves being held and cuddles
Hearing fine as understands about 5 words and will respond to those
Sleep wasn’t always great but when turned two started getting better and now sleeps 8 hours straight at night and 90 mins during the day. Which is not enough when combined

Please give me your thoughts. Did any of your children display these signs? Did it turn out to be Autism/delayed development? Did they outgrow any of it?

@Zoflorabore no I love reading the lengthy posts, gives me a better insight especially from the perspective of an adult who has lived through this. Thank you for sharing.

@Merrymumoftwo
That’s a great saggy, thank you. It’s so strange because it’s like my GP has a checklist of things to chase me up on but absolutely zero urgency when it comes to my daughter’s situation!

Thank you @LEELULUMPKIN
Honestly only time in my life I wished I had a crystal ball!

@Aswad it's actually frightening reading this because you are practically describing my 2 and a half yr old Dd. The only differences are she is a fantastic sleeper has slept 12 hours a night since a few weeks old. Also she has about 10 words but the rest is the same.
We had a speech assessment recently and they referred her on for assessment. Got a letter from the Assessment of Need team yesterday to say they want to wait 3 months and have another speech assessment.

Can I ask does your daughter have good eye contact. My dd does with everyone. She also initiates play with her sister and her sisters best friend but gets really upset with other kids ..

I'm heartsore at the moment from it

Hope it all works out for you. I’m fascinated to read about a few ‘traits’ I hadn’t heard about before.

Chewing clothes is the one that stands out. We had this issue in Reception but it was a thing that a number of children in school were doing so I’d only heard of it as phase like thumb sucking etc.

Walking late - 16 months wasn’t considered especially late when my DS was small.

The parallel play thing is a difficult one. My DS wasn’t early to do this at nursery but he’s an only child. As a teen he is Mr Sociable as an infant the only query moments we got were because he liked to talk to adults and read early. Both complete red herrings.

Hello,
I don't know if my experience will make anyone feel better about themselves or their DC or not, but I'm going to try
My DSis is autistic. She isn't quite like other big sisters, not quite like other people's girlfriends, not quite like other friends. But she is and was an amazing big sister. She looked after me (still does) in the best way. She might not get jokes very quickly, but she has a wicked sense of humour and the joy when she finds something funny is great. She probably got more attention growing up, because she was "harder" to parent, but on the other hand she could play with me for hours and hours at a time. She had meltdowns or shutdowns in public, and sometimes even now I get embarrassed when she doesn't follow social cues or norms - but she has taught me that I shouldn't care what people think of me, that I should see my own worth in being myself. She can't tolerate loud busy social events and parties, but she's the best to have around at a smaller gathering playing cards and just chilling. She has a lovely boyfriend who also struggles socially in some ways, they complement each other brilliantly. She has a small but select circle of friends, who love her like I do even if they get exasperated sometimes!
Most importantly, she is happy and accepted for who she is. Some of the things I've mentioned won't be applicable to other autistic people. It is perfectly possible to be entirely happy without a longterm relationship, or a friend group, or speech, for example. But I thought I'd give an example of what it's like to have grown up with an autistic sibling, in case it helped. I'm not saying it wasn't or isn't hard at times. I'm not saying she doesn't struggle with a lot of stuff that other people take for granted. But she is still a valued member of the family, her peers and the wider community. Autism, however it affects someone, isn't a death sentence.

@whydidthedoordieagain

Hello, I don't know if my experience will make anyone feel better about themselves or their DC or not, but I'm going to try My DSis is autistic. She isn't quite like other big sisters, not quite like other people's girlfriends, not quite like other friends. But she is and was an amazing big sister. She looked after me (still does) in the best way. She might not get jokes very quickly, but she has a wicked sense of humour and the joy when she finds something funny is great. She probably got more attention growing up, because she was "harder" to parent, but on the other hand she could play with me for hours and hours at a time. She had meltdowns or shutdowns in public, and sometimes even now I get embarrassed when she doesn't follow social cues or norms - but she has taught me that I shouldn't care what people think of me, that I should see my own worth in being myself. She can't tolerate loud busy social events and parties, but she's the best to have around at a smaller gathering playing cards and just chilling. She has a lovely boyfriend who also struggles socially in some ways, they complement each other brilliantly. She has a small but select circle of friends, who love her like I do even if they get exasperated sometimes! Most importantly, she is happy and accepted for who she is. Some of the things I've mentioned won't be applicable to other autistic people. It is perfectly possible to be entirely happy without a longterm relationship, or a friend group, or speech, for example. But I thought I'd give an example of what it's like to have grown up with an autistic sibling, in case it helped. I'm not saying it wasn't or isn't hard at times. I'm not saying she doesn't struggle with a lot of stuff that other people take for granted. But she is still a valued member of the family, her peers and the wider community. Autism, however it affects someone, isn't a death sentence.

Thank you for this post ❤️

I'm autistic. I'm also a mother of 2, have my own house, have a degree. It's not a death sentence, if diagnosed she'll still be your same, lovely child you'll just have a different lens with which to view her behaviour.

I can't tell you what she'll be and do, but nothing has changed except yourself.

My daughter when she was young had the following some not considered ASD however we were lucky to see a good specialist who saw them as trans just different

She was the quietest little girl, very clingy to me and would not sleep unless close to me. Then bc she would sleep long hours and was often described as a very good/easy baby.

She would look me in the eyes and look at others but her preference was to stare at me.

She started speaking when she was supposed to likewise walking albeit walking was always on tiptoes.

At 16 months she regressed completely, stopped walking would only say mum or mmm where she had originally 100 words. At this point we could see why people would blame the MMR but to us at that point we thought it was she was missing me as I was back at work and shifts had changed three times in as many months.

She started walking again quite quickly but it was tiptoe walking or jumping. It was at this point hand flapping started.

Her speech was unchanged, still only mum so we spoke to the health visitor who said she would review at her two year check up. We were going to the local children’s centre and noticed they were doing speech sessions soon called “chatterbox” so spoke to the centre manager and was put forward for those sessions. We had a four month wait by this time she was 20 months old.

Two year visit came around and health visitor was unconcerned and said she would review. I had raised a child with learning disabilities so knew things were not quite right.

We went to the chatterbox session with the community SLT and on seeing our daughter she was referred to the local community team. She was seen quickly, within a few weeks as we said we would take any cancelled appointments even at short notice.

The SLT we saw was actually on the autism diagnostic team although by that time we had used good old doctor google and come up with autism though at this stage never said it to anyone. We did this after health visitor brush off. By the end of the first session she asked us if we had spoken to anyone. We explained the conversation with the health visitor and said we had also been researching. She looked at us both and said “I am going to say one word to you, Autism” At that point it was a relief especially as when we explained how so many of her traits were not typical she explained they never are and that it is the triad of impairment that gives the diagnosis not the individual traits. We left that day with a lot of leaflets and information and with our daughter placed on the formal diagnostic pathway. We also were given the dates and times of sessions run by the local autism outreach worker who work with occupational and speech therapy.

Our daughter’s formal diagnosis came at 3 years one month. She is mostly still a quiet child although she has significant sensory and emotional needs.

The diagnostic team did not use high or low functioning or even classic autism. Her diagnosis is ASD, SPD, ,GDD and hyper mobility.
SPD - sensory processing disorder
GDD - Global development delay

The path is a long one and yes you may mourn the child you thought you would have but you will celebrate the little things more than most.

It is okay to be scared, frustrated even angry. In time you will pass the grieving process and settle into a routine. The only other tip I would give is watch for cues, there will be things that calm your child sensory needs, chewing seems to be one you mentioned, divert from chewing clothes to chewellery or other similar products rather than trying to stop it. As our children need these stimuli to regulate them.

Have a look at the videos here which give an understanding into how some people with autism experience the world. www.viralseeding.com/national-autistic-societys-too-much-information-campaign/

@merrymumoftwo how old is your dd now? How is her speech? My ds is awaiting assessment but we already have a sort of diagnosis of probable classical autism and he had a similar sounding regression. The non verbal thing scares me more than almost anything else tbh.

She is 10 now and can tell you a lot of her needs still struggles to verbalise illness and feelings or what makes her sad/happy.

@switswoo81
Her eyesight is probably not great. If in singing she’ll look at me but won’t hold my gaze consistently or for long. At nursery if it’s carpet time she’ll often wonder off and if she’s sitting she won’t listen to the staff but look around. I understand how you feel. I see mothers having conversations with their little ones and I wish for that all the time

@whydidthedoordieagain
Thank you for sharing. It’s really helpful hearing about how adults deal with autism. I always naively think of it as a childhood condition so it’s nice to hear what can happen in adulthood
Your sister sounds lovely, you’re lucky to have one another 💖

@Meatshake thank you. I hope she can grow up to be independent like you.

@Merrymumoftwo
Thank you, that’s really helpful. Other posters have echoed that sense of relief once a diagnosis was made. That’s a good point re not stopping her chewing her clothes. I’ve noticed it’s never indoors so possibly overwhelmed by being outside.

Regression is another thing that scares me or adding to her list of symptoms. There’s so much unknown

Hello OP, my DD is 6 and was diagnosed with autism aged 3 years 11 months.
I think we knew from around 12 months that she had some quirks but we thought at the time that she was a sensitive child.
She spoke very early but her language was very echolaic and would just constantly repeat phrases and words without necessarily understanding the meaning behind it.
She also never waved or pointed but could laugh and smile if she was pleased to see someone and liked cuddles. She was also very sensitive to light at a young age, never touched those touchy feely books etc. She has always had a very limited beige diet despite dietician And speech and language intervention.
Aged around 2 I noticed that she never interacted with other children and was very self directed and spent most of her time re-enacting stories or tv programmes or nursery with her toys all day when playing. At that point I was concerned that she didn't seem interested in playing with other children but everyone brushed my concerns off.
I received a call very early on when she went into the pre school room at nursery to say that they felt she had autism. I was so shocked because I just thought she was sensitive and a bit introverted. They referred her to a Ed psychologist who in turn did an EHCP and referred her to a paediatrician who diagnosed her.
She is currently about to go into year 2 and she has come on so much. She is very intelligent and a happy affectionate child. Her speech, language and communication have made massive leaps and she is only 11 months behind her peers now in this area.
I'm not saying that it is plain sailing and she has since been diagnosed with sensory processing disorder.
She also has a few friends in her year group who seem to understand her. I find that the boys in her year are much more tolerant of her.
I just wanted to say even if your DD is diagnosed with autism it isn't a death sentence. It is very challenging at times and at first I think I mourned what I had wanted for my DD but she is on a different path and that's ok.
Apologies for the long post I just wanted to offer you some reassurance as a mum who's been in your shoes.

Thank you so much @Daisychainsandglitter
It’s interesting how most children will share traits but there’s also so many differences. My daughter has zero speech even now when she’s almost 2 and a half. Her understanding is also really low and can’t follow simple instructions eg get me this or show me that. I think she understands about 15 words tops. It scares me to think she’ll always be like this or even regress
Her nursery has been great but there haven’t been many children attending as most are keeping their kids at home. I’m hoping come septic there will be many more there and she’ll just ‘click’ with one or two!
Thank you for sharing once again ♥️

@Stompythedinosaur
@CountessFrog

Could you help me with your expert opinion as I have very similar issues:

Hi please help.

My 13 month old boy has shown signs of speech regression, and other worrying signs.

He said mama at 9 months... continued with it to 12 months but no other words, a bit of bababa and wawawa but nothing else. Over the last few weeks he’s stopped saying mama and gone back to shrieking and blowing raspberry’s, it’s like he’s 8 months again. He’s also stopped waving. He only did this for a short time but it’s stopped altogether. He has never pointed. He does clap in response to me clapping and when he sees someone he’s happy to see, and sometimes when I say ‘good boy’. There’s no other gestures like nodding head etc.
I was worried about him having no development in language but now he’s gone backwards.

He never responds to his name but I don’t know if that’s new or not, I never really noticed.
He does look round when he hears music from his tv show he likes, or if I say ‘no’ he stops and sometimes looks. So I don’t think it’s hearing.

He initiates peekaboo and chase me - crawling. He can not walk yet.

He pulls books anc toys from a shelf to play alone, if I join him he will interact, sit on my lap, but he won’t bring things to me himself.

He does do some imitation play. He has a kitchen and likes it if he puts a cup to my mouth and I pretend to drink.

He eats and sleeps very well.

HV came out today and although has made pead referral and said he’s not hitting target and has developmental delays but basically seemed to dismiss the regression side of it as he only lost 1 word.... but that was 100% of his speech!

I feel like it’s massive red flags for autism and she’s dismissed that as ‘far too soon’.

I feel really stuck. He doesn’t babble only shreik to get responses now and I spend hours each day babbling and talking to him and get nothing repeated. But if I blow a raspberry he does it straight back.

Eye contact is fairly good. He smiles if I do something funny, but not just if I smile at him anymore (he did at 6-9 months)

Please please reply and help me my head is spinning.

(For info, no history of asd, English only speaking household. )

Hey buttons

Please try not to spin. Without typing out a long essay on my phone, many of the things you mention are actually encouraging signs that he’s not autistic - not that I’m suggesting you shouldn’t continue to monitor things, but I’m inclined to agree with your HV that it’s very early days.

With regards to his communication development, maybe try keeping a log. The ‘mama’ he was using at 9m was unlikely to have been a meaningful word, as this doesn’t usually appear until 12m. Boys can be a little slower than girls, too.

Just really wanted to reassure you that I don’t think (from a professional view) that there are huge red flags at this point, but do feel free to update us when he’s 15-18 months, you might see some good development between now and then.

Hi @Aswad I have just found this post, I am going through a similar thing with DS (28 months)
Can I ask how you are getting along? We have been referred to the child development team x

Hi @SarahAnne87
My LO is three now and unfortunately still not talking, not even mama/dada/no. I won’t lie, I find it really heartbreaking
Her understanding is slowly getting better as in she understands a firm no and single word nouns. Still not responding to her name/pointing/shaking or nodding her head
We finally have some SALT sessions coming up and I can update you once we’ve had a few.
Wishing you and your little one all the best, how are you coping?

Hi I have just came across your post and it sounds so much like my daughter who is 3 next month. Can I ask how your daughter is getting on now?

16m is not late walking.
Lots of 2.5 year olds don't play with peers at all. My son didnt really until 3.5, hes throughly NT.
Lots of children walk on tip toes occasionally.
Lots of toddlers chew & put things in their mouths, very normal at 2.5.
It's very normal to have to pin down children to brush hair and teeth.
Randomly laughing wouldnt worry me at all. 2.5 year olds find all sorts funny.

The things I would say might indicate needing some extra help (too young to say more though)

• total lack of speech. How is her hearing? Does she communicate in other ways at all?
• total lack of pointing/clapping/waving

The two kids I know who actually turned out to be autistic, the most noticeable thing was they seemed to be just in a world of their own 90% of the time. One talked, one didn't.

I know several kids who were late talkers. Most were NT (two had ear & hearing problems). One turned out to have quite a traumatic home life (abusive dad), another has some quite complex learning disabilities.

The only person who can say whether or not it is autism is a person who is qualified to assess your child in person. Not random people on the Internet.

I can't say if your daughter is autistic or not, but there are a lot of signs pointing to a need for further investigation. I would speak to the health visitor ASAP (as I did, my DD was very similar) and they might refer you to get her hearing tested to rule that out, might refer you to a SALT and if there are still concerns that might lead to her seeing a paediatrician. Keep lots of notes about milestones, communication styles etc.
In the end my DD was diagnosed at 2 and a half. She's now 11 and doing great! Broadly in line, or almost in line with age related expectations for most academic subjects and lovely company (she did learn to talk with the help of PECS and a good SALT).