4.5 year old daughter with possible Autism

[Ollico]

I knew my daughter was different from a young age but just thought she would out grown things. I didnt realise it could have been autism until she started SALT.
does this sound like autism?

Here is a list of things my daughter struggled with from an early age. (Before 3 year old)
*never made eye contact or if she did she wasn't actually looking at you more like the side of you or would look at you from the corner of her eyes (rare)
*slow at meeting all milestones
*was not talking by 2 (HV referred her for SALT) She did say 'mummy' 'daddy' once or twice but that was it.
*would not answer to her name. I would call it over and over again and it was like she was in her own little world
*could not follow instructions, like, 'can you get me your shoes' 'can you pick up your teddy' even with me pointing to them she couldnt understand what I was pointing to.

• hand flapping rapidly often with what sounds like a nervous giggle (if standing at the time would jump and flap at the same time *was not interested in other children when attending soft play, baby and child sessions etc unless she wanted what they were playing with. She was more then happy being on her own. *imagination play was pretty non existent unless you showed her and she would copy. *sensory issues would keep changing. At first she hated the hoover. Would scream and cry. With work that became ok but then it turned to balloons. Again scream and cried and wouldn't go near them. After a while them became ok (apart from the bigger balloons you can buy which was still an issue although not as bad) hated her hands being dirty which changed to spending ages washing and re washing her hands to the point of them turning red because of the cold water. Loved splashing in puddles but hated getting water on her clothes even just a drip. Would want to take it off there and then. Likes a bath but hates water anywhere near her face (hair washing a nightmare) was petrified of the hair dryer. Hated her hair being brushed *would say her name rather them I'm hungry etc *fixation on certains things. Arts and crafts, same cartoon over and over again, nursery rhymes songs over and over again. She couldn't have a conversation with anyone but could say every word of a nursery rhyme. Would watch anything with dinosaurs over and over again. Often naming dinosaurs. Getting me to read the same book over and over again in one sitting. *no sense of danger. Would run into the road. Jump down the stairs and expect you to catch her! You need to be on your guard all the time with her. *would hurt herself but couldn't tell you where

Starting pre school
*loved going in at the start of the day
*would always pick art and crafts sort of play, taking her time and paying attention with lots of care with what she was making
*often smiling and giggling
*did not interact with other children
*was using limited language to communicate with teachers
*was self led showing rigid attention
*giggled and flapped hands frequently
*could not cope with transitioning. Would run and hide at the top of the climbing frame if it was time to come inside from outside play
*reluctant to stop her play for carpet sessions
*was easily distracted when on the carpet sessions and would crawl away
*finds accepting 'no' from a teacher difficult and would have meltdowns often
*does not share at all
*will try and take toys from others if she wants them and will scream and get angry when the child doesn't give it to her which can result in violence towards that child
*did not like a new child starting pre school. Would seek this child out to be spiteful to them or take her frustration out on them
*made 1 friend in pre school and latched herself to her, often following her and copying play
*would often not want to leave pre school at the end of the session, often running and hiding or trying to run back into the class room and when she couldn't, it would lead to a meltdown

My daughter was referred for autism and we are still waiting for a diagnosis.

Where she currently is at age 4.5 years old. I delayed her school entry until after her 5th birthday so she is redoing pre school at the same place but with different children.

*speech has improved massively and can now say sentences although does struggle with back and forth conversations and struggles with what she wants to say
*still has a awkward giggle and hand flaps but not so severe. Instead tries to put all her fingers in her mouth or rocks
*eye contact has improved. Its more fleeting and can hold eye contact for longer
*imagination play has improved but only in the last 6 months or so
*answers to her name unless she in engrossed in something and goes into her little world
*can follow instructions but gets overwhelmed when given several instructions ie can you point to the boy in a blue top then the girl kicking a ball. My daughter would hear ball or blue and point to whoever is wearing blue or any ball on the picture
*still has fixations with arts and crafts, getting me to read the same book over and over again. Wants to watch the same video on YouTube (find the odd one out or differences)
*now says I am, I need, etc instead of using her name.
*still cannot share and will have a meltdown or hit
*turn taking is a struggle with other children especially with more then one other child. Turn taking Easier with an adult.
*still finds transitioning difficult but has improved with using the now and next board.
*can last longer on carpet time before she gets up and leaves
*finds it had showing emotions but is improving with using the colour charts. She can select the colour group with what emotion she is feeling.
Can take herself to the calm corner when she is feeling overwhelmed or knows when she has done wrong ie bit another child.
*still prefers to play alone but will play along other children and try and initiate play but that is rare (preschool)
*only has 1 friend which again she latches to.
*still has sensory issues with her clothes getting wet, water on her face. Hands need cleaning although only needs to do it the once now instead of hundreds of times
*happy and giggly and loves cuddles (sometimes overly cuddly until she is actually strangling you!)
*still no sense of danger!!! Still fall backwards and expects you to catch her even if you tell her no!
*very active can run up and down the hall for ages or spin in circles until she is so dizzy she falls over
*has only just learnt to spell her name but has no interest in learning to read, spell. Can count to 14.
*just learnt to put her coat and shoes on but will have meltdown if I say they are on the wrong foot and we need to redo it.
*can ride a bike with stabilisers but has no sense of space or surroundings.
*doesn't seem to feel pain straight away and often says 'I'm ok' but a fews minutes after will in fact start to cry.
*loves the outdoors and bugs often says they are her friends
*doesn't show what she has learnt in new surroundings. Ie will not talk or try and initiate play with other children at the park, would just follow them around or play on her own
*rarely says hi, bye or waves unless prompted by me.
*hard to get to sleep at night but then equally as hard to wake up in the morning even if she has had a good sleep
*leaves pre school much easier now

There is probably more but cannot think of them.

Her speech and language therapist said I should apply for a EHC now before she starts Reception in September because it does take a long time.
I approached the SENCO from school who booked me in with a meeting to discuss. She basically told me that the school can cope and we wouldn't need one and it wouldn't get improved.
I tried to explain that my daughter is not where she should be for her age regarding learning and social communication and I think the only reason they have seen such progress with her is because it's her 2nd year at pre school and is a familiar setting.
I do not see the progress with her social communication outside of pre school and is still very socially awkward. Ie, son 7 had a birthday party. My daughter was not interested in any of the children including a little girl who attends her pre school class. The girl said hello to my daughter and she just stood there and didn't say hello until I promted her too. Didnt interact with her again for the whole party. My girl went off and done her thing until it all become overwhelming and what tipped her over the edge 15 minutes into the party was a boy jumped on her trampoline and she had a meltdown and refused to participate for the rest of the party. Even when it came to eat. She sat on a chair away from all the other children.
SENCO was certain they could manage without a EHC although she did slip up and say the school has to pay 6k before they get funding and I know the school is really struggling with funds and COVID hasn't helped. She even said that she would not agree with an autistic diagnosis for my daughter as she had made such huge progress.

Ever since that meeting I am doubting whether my daughter could have autism. Yes she ticks a lot of the boxes (when she was younger) but doesn't on others and she has improved a lot since she was small. My partner seems to think that the school are trying to play down my daughters problems so a diagnosis for autism would be harder (they are about to fill out the ASC setting form from paediatrics) and less chance of a EHC going ahead should I apply myself a
Would the school be that petty?? Surely not!
Any parents dealing with the same?
Does it sound like autism?

I understand its a very long post! Sorry about that and thank you if you managed to read it all!!

Also forgot to mention that my daughter saw the paediatrian over video call and my daughter just rolled up in a ball and would speak to her.
Also saw her in clinic and my daughter was like a completely different child. Done most things which was asked of her!! Completely not like her at all.

Not everyone with autism presents the same and ticks all the stereotypical boxes. As you say DD certainly shows some signs, so whether it is autism or not she would likely benefit from further assessment.

Definitely apply for an EHCNA yourself, you have nothing to lose, IPSEA have a model letter you can use. If you don’t have to appeal the process takes 20 weeks, but, sadly, many do have to appeal. You don’t need a diagnosis to get an EHCP. Appeal if you are refused, the majority of appeals are upheld.

For various reasons many schools and LAs tell parents their child doesn’t need, or won’t get, an EHCP but the parents go on to successfully apply themselves. Many schools may say they have to spend £6k before getting funding, and they may have to if the SENCO is not on the ball, but it isn’t quite as simple as that and legally the LA are responsible for all the provision in EHCPs.

I have a similar experience with DS 4.5. We had speech delay, pre-writing delay, social interaction issues and attention problems. He improved a lot over the past year. Now other children want to play with DS and he is able to identify 3 or 4 favourite children and talk in sentences but not great back and forth.

We had a meeting with the paed at 46 months and I explained that DS always caught up but was somewhat behind. He said it didn't matter and gave the analogy of a child who couldn't walk till they were four. It didn't matter that they could walk now it's the reason behind him not walking when he should have that's important.

I often doubt whether he has autism or whether it is as severe as it is being made out to be and whether our system tries too much to fit children into a box.

Thank you both for your replies.
I agree my DD is behind her peers but she is getting there with a lot of help from speech and language, now and next boards, PECS and emotion colour boards.
Her pre school teacher said she is more willing to try and join in if it is something that interests her but wants it to be her way all the time.
She also doesn't understand when the children play make belief and pretend to be someone else ie, 1 child pretended her name was Elsa and my daughter would not have any of it. Just kept saying no no no over and over again, which then led to my daughter screaming and off to the calm corner for a little while.
With the progress she has made at home and pre school is making me think she does not have autism but then she did/still does have many 'red flags'

I guess I'll find out eventually as she is on the pathway.

Hi my son has autism and was diagnosed at 2 years 10 months he is now 11 years old.

I knew deep down from a young age that he had autism he struggled with change to routine resulting in meltdowns, no eye contact, did not have a interest in other children or adults, he didn't play with toys ( he lined everything up) and he was non verbal till 7 years old.

He is doing amazing now and is in mainstream primary school. We deferred him so he started school a year later and it made a massive difference.

It's good that your wee one is on the waiting list and hopefully won't take to long.

Feel free to message me if you want to chat. Xx

From what I understand the differences become more pronounced as they get older and the transitions at school get more intense and difficult. Each child and experience is different. My best friend at school was always somewhat quirky and struggled with a level of stress and anxiety around exams etc and general issues around executive function. When he went to university he was diagnosed with asbergers. He only really got his life together in his mid 30s.

My DS is now pretending that he's Peppa pig and his sister is George and his best friend is Suzie and refers to them as such in a playful way. This would have been inconceivable 6 to 12 months ago. He's August born and we considered holding him back a year but didn't as the school were committed to providing him with extra resources and pushed the EHCP.

Hi KSL
It's so good to hear your son is doing so well.
I agree with the deferring for a year. Reception would have been too much of a big change for my daughter. We have agreed at the start of summer term that she will attend the pre school full time once a week and build up to 5 days so the transition from pre school to reception is not too much of an overwhelming experience for her.
In my heart I do believe she is on the spectrum somewhere, just due how she was when she was little but it's just the fact that it seems like she is 'outgrowing' (probably completely the wrong word to use) the red flags she had when younger compared to now.
Although that could also be down to the 2 years of help she has had already.
The SENCO wants to wait until after she starts Reception to see if they will apply for the EHC.

Hi skip.
That's really good to hear that your sons school was really supportive of a EHCP.
Mine just told me to apply myself but it will probably get rejected. They do not seem to be very supportive considering it was the pre school who brought up the 'red flags' to begin with and wrote me a letter with her strengths and disadvantages (original post under starting preschool was their own words about my daughter)
But since I mentioned about the ECH they have to have changed their tune.

My daughters pretend play is starting from what she heard on TV and then sitting there kinda repeating what she watched but I guess that's a start to imaginative play??

Hi @Ollico that is good that school have agreed to deferred start and u have been getting help and support for your daughter for the past two years.

I do find that I have to fight for support for my son in primary and trying to get plans put in place becomes a bit of fight. It's like they try to down play everything. I don't know if it due to lack of funding ( we are in Scotland) I've often had the head teacher refer to my sons behaviour as just normal 11 year old behaviour when it clearly isn't. He has also just been diagnosed with Dyspraxia he already has verbal Dyspraxia and when his OT sent the school a form to complete before he was diagnosed they said he was on par with his peers with gross, social and motor skills and he clearly isn't. He is very happy to go to school and it has helped him loads with development. I just wish he had more support in place and more 1:1 hours to help support him as he often loses concentration unless it's maths he has always had a obsession for numbers and can actually do maths better than me haha.

I would def try to get support in place and some type of plan before your daughter starts school and make sure they stick to it so that ur daughters needs are being met.

Don’t wait to apply for an EHCNA. Sadly many schools put parents off applying saying their DC won’t get one or it isn’t needed but the parents go on to successfully apply themselves. IPSEA have a model letter you can use. If you are refused appeal, the vast majority of appeals are upheld.

DD2 has ASD and others used to consider her be OK at imaginative play, and she was in a way, but she would play out the same scenes she had seen IRL. So if she had been shopping recently she would play out that, including using the same phrases.

kslj have you looked at a CSP and spoken to Enquire?

@Imitatingdory Hi yes I have been in contact with Enquire and also a charity that have contacted me to go through what would be needed for a CSP. I'm just in the process of it all now.

My sons old primary school were brilliant he had all the support in place but we moved to a different council area and had to change him schools then covid hit. The school itself is good but not very good at supporting children with additional needs :( it's such a shame that we have to fight to get what our children need.

Hi, my daughter is 3.75 years and I can relate to a lot of what you have written. She too has massively improved. Her possible asd traits are speech delay, significant gross motor delay (also hypermobile), pica (for paper, card, wood), stimming, issues with transitions and sharing, lining things up, reverse pronouns, echolalia, almost no conversation flow, limited imagination for age, hasn't made any friends at preschool-although children often approach and play with her and she will then interact with them. However the stimming is getting less, speech is improving, she's just starting to use the correct pronouns, imagination and socialisation has improved, chews less.
She is on the social-communication pathway for possible autism assessment but we haven't even seen salt yet. Pre-school have filled in a questionnaire. Paediatrician thought some autistic traits but didn't feel she would score particularly high in assessment. I'd love to know if she has autism and developmental delay or just developmental delay.

Hi Rhubarblin

When my daughter saw the paediatrian, she acted completely different then how she is day in day out. The paediatrian said its nothing they haven't seen before but she was showing several 'red flags' to be put onto the pathway and that girls can come across different then boys with autism.
With how much progress she has made since then, then I'm not quite sure if she will meet the cutoff now but we will see. Another thing I've been told is children (more commonly girls) can 'mask' their autism so although they are showing progression, they are actually just masking it.

My daughter had a very bad day today.
She has latched herself to 1 girl at school and is actually learning through her how to play but, this poor little girl is starting to branch out and make new friends. My daughter did not like that one bit!! She had a complete meltdown to the point where the teacher had to detain her including her arms and legs as she was kicking out and trying to hit, she was screaming and screaming. The poor little kids were petrified (considering my daughter is almost 1 year older then most)
I'm really hoping tomorrow is a better day.

I've decided I'm going to apply for a EHCP (I have nothing to lose and a lot to gain) with or without the schools support. My daughters speech and language therapist said she is fully behind me and will write up a full report where my daughter is struggling with.

Sounds just like my daughter. She was diagnosed today.

Yes it does sound like autism.
I am a Speech Pathologist (Australia) and also do autism assessments and have an autistic daughter. Whilst autism is a spectrum, and the progress you have described is wonderful iy does not take away many of the features of autism that continue to be present.

@Ollico @Rhubarblin would love to hear an update as i am in a similar position to where you were when you wrote on thjs thread wjth my dd

@121314mum
Hello, my daughter is now 4yrs7m, I still don't have a yes or no as to whether she has ASD but she was seen by SALT in the summer and definitely has Language Disorder. She's at mainstream school with an EHCP, just started Year R, gets speech therapy etc at school. She is very sociable now and interacts a lot with the other kids. Her speech is certainly behind other kids now but over an average 3yo now. We have basic conversations about what she did at school and she expresses her wants/needs well. For example, I asked her earlier, "Who is your favourite teacher?" and she was able to answer, "I like Mrs [name]!" She does chew still but uses chewelry so doesn't go for the paper, books etc as much. She's just calmer and is overall better with transitions, sharing etc although more attitude/sass is coming out now she can express herself more 😂. She has more imagination in her play, she even has an imaginary friend. Also still enjoys a good lining up though of toys! We do still have plenty of tantrums but they have decreased, she wasn't happy her favourite socks were in the wash earlier and ran into the study and threw some things on the floor, it lasted about 90 seconds though.