Suspected Autism

[Lizzietalks87]

Hi, looking for advise.
My daughter who is 4 in May went to the speech and language therapist back in the beginning of the year and after 30 minutes she said she she thought my daughter needed to be assessed but we didn't feel she was doing anything put of the ordinary for a 2 year old. She didn't say alot of words maybe 10 at most but since then she has started nursery and now they suspected autism after her only being there for a few weeks, but I feel like they never gave her time to settle in to nursery and be around other children in a setting like that. She now goes to nursery 5 days a week for the full 3 hours a day have no issues with her going her speech has massively improved she can count to 16 say her colours name all her animals and their sounds she can say 3 words put together she says alot. The only things she doesn't say is her needs and wants as in juice or bed mummy daddy, although she can say these words and has said them she does not use them. Everything is actions if she wants juice she gives us her cup if she wants food she goes to her cupboard. It's as if she is too lazy to speak and will only talk when she wants too.

The school have said she wasn't engaging with others which she now is.

Sorry this was long. I'm just wondering if people have experienced the same. I feel she's been pigeonholed far too quick

Sorry for typos I'm on my phone

I personally would be contacting someone if I'd had 2 different professionals say this to me . It may help get any support she could need in the future . And if they say no she isn't autistic then your mind is at ease x

The only things she doesn't say is her needs and wants as in juice or bed mummy daddy, although she can say these words and has said them she does not use them. Everything is actions if she wants juice she gives us her cup if she wants food she goes to her cupboard.

Yes she needs to be assessed for autism.

Two different professionals who see a lot of children think so too.

Don't delay or avoid getting your child support.

I feel she's been pigeonholed far too quick

Your wrong. What you have, is proffesionals showing concern around your childs development. Recognise it and seek the appropriate support. Autism isnt recognised frequently in young girls, so if shes displaying signs at such an early age, I would get it looked into.

So here’s the thing, there are four potential outcomes: - if you get her assessed and they give a dx - you get early intervention which is great. If you get her assessed and there’s no dx, well there’s a question answered. If you don’t get assessment and nothing was there, no issue but if you don’t get assessed and she needs support, she’s not getting the assistance she needs. The assessment is mainly play based for kids and won’t be invasive or distressing. It takes ages so the sooner you start the ball rolling the better. Getting a dx won’t change your daughter in any manner but will give you tools to help her. It’s my area of expertise and from what you describe it would be a good call to go for it and when two/three separate professionals who met your daughter all think the same, it’s unlikely that they are all wildly jumping to conclusions. Get the ball rolling and have a good chat with the person who is doing the ax to explore the pros and cons and then make informed decision.

Op I had a very similar child. Multiple people said autism and I didn’t want them labelled so I refused diagnosis. I regret this so much now and my dc would have been in a much better position in Reception if I had listened. I would get her on the waiting list now - it will take until she’s 4 to reach the top anyway.

In case it’s useful info my dc also had good words but couldn’t use them to say what they needed - you might find it useful to look at the “pragmatics of speech”.

Definitely get her assessed! Lack of social interaction (like calling you mummy, greeting people, asking for things verbally etc) is a big part of autism. If she is diagnosed then you will be able to help with her extra needs more and understand why she's kicking off (loud noises etc)

Agree with all the above. This is a positive thing, they are engaged with supporting your daughter and only good things will come from assessment. As laid out above, if they determine she isn't autistic she'll only have had extra attention and support. There is no stigma in school settings so I don't think this would pigeonhole her. Also, I feel like children aren't 'lazy' so much as not motivated to do things and the question is why are they not motivated. If my son (suspected autistic, in reception, still waiting after nursery referral) doesn't want to do something that other peers are doing (such as riding a bike or drawing) it tends to be because it's not intuitive for him and therefore he's not motivated. However there is plenty that he is motivated to do such as play extensive and imaginative games, talk at length with my or other family about what he's thinking or feeling etc. The more reading practice we do, the more he is finally interested in the phonics books his reception teachers sends home. Knowing some of his challenges, especially from early on, has really helped to support him and he's doing really well. Good luck with it all, autistic or not it's a minefield and hard to know what do with with feedback like this x

Listen to the 2 completely separate professionals and have your daughter assessed.

So she is collecting words but not using them to communicate needs or socially. Taking you to items instead of asking. Yes this is all consistent with autism. Have a look at PECS (picture exchange) as a teaching tool. The speech therapist should be able to advise even without an autism diagnosis. I would recommend going on a PECS course to learn how to use it. Early intervention before age 4-5 can make a big difference. The Hanen books / resources are also good. You don’t have to pursue an autism diagnosis to access speech therapy if you don’t want to. Sometimes a language disorder can look like autism.

Thank you everyone. She is already waiting for another speech and language therapist to go in the school for her and they have already started the ball rolling. I just really don't feel like it's autism I feel like it's a speech delay. My 15 year old son was the same at her age he didn't talk til almost 5 and struggled in school and then after a while he was fine he went through the autism diagnosis and was tokd no he didnt have it so i dont want to be labelled too fast Autism terrifies me but I'd never deny my daughter help but I really in my gut feel like it's not that.

She has PECS cards she can say all the animals name and colours the others she gets too distracted by other things when we try to do them or she will refuse and walk away

She can say alot of words, thank you and sorry let's go get up she can sing full nursery rhymes it is just her lack of telling us what she wants

@Lizzietalks87 she sounds like a proper poppet! This was very much what my dc was like! Still very clever and at a ms school and has a friend similar in personality now. Goes to clubs and has lots of interests and passions. Diagnosis of autism came in later primary years and would have made a huge difference to my dc if it had been obtained early on.

I think it would be worth letting them proceed with the autism pathway for now as my dc needed a lot of social support and teacher support to access curriculum and the other kids in the early primary years. It’s very hard for them not to be able to communicate their wants and needs and while you shouldn’t need to have a diagnosis to get support in practice it unlocks so much.

The point of PECS is the exchange - understanding that you swap the card for something you want - which then embeds the idea its an interaction with another person (not just announcing stuff to an empty room as my son used to do). Working through the stages of PECS is useful for teaching the purpose of language and motivation to communicate. It’s not more just naming picture cards.

I don't understand your attitude at all. I WISH my son's autism had been clocked that early. I'll never get over the guilt that we missed out on early interventions that could have made his life easier. I thought he just had a bit of a speech delay but I was wrong. If anyone had suggested we get him assessed I'd have been on it that day. He's amazing. But it would have helped him if we'd realised sooner. Autism isn't something to be afraid of, and in any case, if she's autistic, she's autistic. Not getting her assessed won't do anything except potentially prevent her getting help early enough to make a difference.

I've been in this situation.

We're 4 years down the line now and still have all sorts going on.

If two people have raised it to you, I would get an assessment. These things aren't said for shits and giggles.

I personally don't like the term label, it's a diagnosis and that's it.
You don't want to miss early intervention.

I went though all sorts of emotions when it was mentioned to me, denial, grief, worry etc. but as I learnt about it more and ways I could help him I wasn't scared anymore.

My Ds was flagged by several professionals and then received an assessment at the age of 4- quite young. I was so upset about it and felt worried about labels and thought he was just developing more slowly thn others and it was not a problem. The main hindrance was getting DH and I on board with the idea he may has autism. Well he does. Plus a whole other things that were diagnosed much later.

My tips;

• don't be afraid. Your DD is still your precious DD no matter what she is diagnosed with. I get it can be scary and confronting, to think there may be something 'wrong' but actually it's just something different. And when you know then you can work with it and work with her and other professionals.
• I really advise against not getting a diagnosis and hiding your head in the sand. A diagnosis opens up alot of the world to you. It helps explain things to the people who will end up educating her, or caring for her health. I have seen first hand parents who decide a label is debilitaing- if your child has autism they will be labelled anyway- but maybe different labels that you don't want. It's not a label, it is a medical diagnosis. You would not refuse to get a child assessed for diabetes if professionals had told you this might be an issue, It's no different.
• Read, read and read. Read everything you can. Knowledge is power.
• Know you will have a myriad of unexpected challenges at times you cannot predict. You parent the child you have, not the child other people think they should be. Again- read and learn.
• Parenting a child with autism can be a wonderful adventure. I get so much joy and amusement out of watching my son (who is 14 now) navigate the world and how he views the world. He is baffled oftentimes but this results in an extraordinary ability to see the baffling and the bewildering and the plain odd in what we view as society expectations. I particularly love following his special interests. It's just ever so much fun.
• Acknowledge you may have a grieving process for the child you thought you would have and the life you thought you would have. But this is your life and its going to be fine. What I find the most difficult are what I call the micro-griefs. You potter along quite well and then you go to sports day and see that your child can't hold a discus never mind throw it. You find your child is the only one in the class not invited to the party. You are called at school because the fire alarm went off accidentally and your child freaked out and hid underneath the sports pavilion and they need your help to persuade him to come out again. Clearly- these are all my real life examples. Acknowledge the micro griefs and enjoy the very many joys.

Your child is your child. If she has autism then she does. It's better to pursue assistance and information and knowledge early. That in itself can open doors and helps to make things easier. My main point is don't be scared. Run headlong into this and find out everything you can.

I don't understand this. How can knowing if she's autistic change anything?

To make an analogy, I am quite frightened of nut allergies. If I refused to have a child tested for peanut allergy when she was showing signs consistent with being allergic, that wouldn't prevent her being allergic. That's not pigeon holing her as allergic. It's just arming you and her with the information and strategies to do the best by your child.

If it's been picked up now, it's a really positive thing. Early intervention is key. My son was diagnosed at 3 (he's now 13) but my eldest (girl) was an epic masker and wasn't flagged (and I just thought she was a bit quirky having no experience of autism back then). She's 26 now and going through assessment. I wish I knew then what I know now. My son's autism was picked up by a specialist HV who did the referral. I will be forever grateful to her.

This is the best response I've had. You've summed it all up how I'm feeling. I am scared of the diagnosis. People on this post haven't read my post properly or my replies because I have allowed the school to put a referral in there is nothing more I can do my end, we are looking at going private as the wait is years to be seen in my area. I have 2 sons one whom is already nerodivergent that was misdiagnosed I'm not against having an autistic child but after having 2 sons I was so happy to have a daughter I don't have a relationship with my mum after a very abusive childhood so I was so happy to have a mother daughter relationship and had all these dreams of how our relationship would be and yes I am upset over something that may not be how I dreamt it would be but that doesn't mean I would love my daughter any different.

So many people I know even family members have lied to get their children diagnosed with autism and I can't understand why anyone would want that for their child.

@Lizzietalks87 I understand this completely and remember well long nights when I was awake in the early hours upset and scared for the future particularly when my dc was between 1 and 3 and it wasn’t clear if they would ever speak.

I’m just coming back on to say while every dc is of course on their own journey, I have an amazing bond with my autistic dc and they seek out cuddles and love spending time with me. Like you say it’s not quite what I had expected but still completely precious and they are and always will be their lovely selves.

You can't lie to get your child diagnosed with autism by the way - a parent questionnaire is a small part of the diagnosis but the child is assessed by at least two different professionals plus input from the school or nursery. Unless the child is the most incredible and dedicated actor ever, they're not going to be mistakenly diagnosed.

Autism isn't something to be scared off. She can have a very happy successful life. Early intervention is key though.

Why are you scared of autism? The diagnosis doesn't give it to her she will already have the condition..

Her ability that she can say words does not change the fact she does not use them. Autism is not an intellectual issue it is a social and communication one.

DD is highly gifted, predicted all 9s at GCSE but when under stress or over stimulated will lose the ability to talk and to make decisions. Her vocabulary is wider than the vast majority of the population, she loves language as a tool but that doesn't mean she can always use it when she needs to.

The fact your older son was also put forward for assessment is interesting as obviously there is something going on.