Autism in toddler - how do you know?

[BlackBarbies]

DD will be two in just under three weeks. There’s so many things that have been concerning me recently and I thought I’d just write them all down so I can get advice but also have a record of things. To keep it brief,

1. DD doesn’t say any words at all. She will babble here and there but never says ‘mama’ ‘dada’ ‘car’ ‘drink’ etc. Doesn’t have her own words like ‘nana’ for banana or anything along those lines.
2. She will hum a lot. Usually when she’s excited or upset. This may be stimming but I’m not really sure what that is? I’d appreciate if someone could explain it in simple terms.
3. Walks on her tip toes very often. Will constantly flap her arms and squeal with excitement when on her tipe toes.
4. Doesn’t interact with children her age at all. She can go to the park, a toddler group and will stand to the side and observe or play with things by herself. She will stack the same blocks over and over again. She’ll have more fun opening and closing a door than playing with another child. She has a 11 month brother (who has a genetic disorder and isn’t mobile) that she doesn’t even give a second look too.
5. Struggles with eating so many textures. Can only really eat dry foods like bread, garlic bread, Yorkshire pudding etc. Anything like mash potato or something will make her so upset.
6. You cannot deviate from her routine at all as she really has a breakdown. I couldn’t try to brush her teeth before getting her ready for bed as that doesn’t work for her.
7. Only replies to her name sometimes but will usually ignore you.
8. Doesn’t give/maintain eye contact at all.
9. If you smile at her she won’t smile back.
10. Doesn’t know how to point.

The list can go on and on and on. She’s my first so I have a lot of guilt about what I must have done wrong. Especially as my second already has a genetic disorder and is severely disabled.

Does this sound like Autism? Does anyone have any advice or have you been in a similar situation? She has her first appointment with SALT next month and I’m waiting for her 2 year health check in order to raise my concerns with the HV.

She’ll start nursery next month so hopefully that can help her social aspect but I’m just not sure how to help her. I really don’t want to fail her and want to get her any help available if she is Autistic. Thank you

So I think you are right to get her assessed.

Im going to DM you a link to a website (local
to me so not posting here)

There’s a brilliant book called More Than Words by Fern Sussman. It’s really thick, but readable. It’s out of print but you should be able to get it 2nd hand.

I was also going to suggest More than Words. Still in print and cheapest place I’ve found to buy it is here:

https://www.winslowresources.com/more-than-words-from-hanen-book.html

This book was recommended by our speech and language therapist and using it did help ds. It might sound pricey but it’s evidence based and produced by an incredibly well respected speech therapy charity.

I understand why you're concerned and you're right to seek an assessment. You absolutely aren't going to fail her no matter what the outcome. It's obvious from your post how much you care and how much time and emotion you're putting into making sure you do the best for her.

Good luck, and take care of yourself as much as you can - this must be a very hard time for you, wondering what will happen. Uncertainty is so hard to cope with xx

A few other suggestions:

The ICan speech therapy charity are amazing and have a free helpline where you can speak to their amazing speech therapist John. I would definitely recommend making an appointment to speak to Him.

I would do the MCHAT autism scoring sheet on your toddler and print it out and take it with you to your appointment.

Also please do push for a hearing test. My ds does have autism but also had glue ear. We hadn’t realised as he seemed to hear things fine. We got grommets done and 3 weeks later he was saying new words.

Even if it is autism, don’t ever forget they will still be their own loveable amazing person. My ds has asd and I was so frightened when he was a toddler but he has good quality of life as an 11 year old. Sending an un mn hug in case it helps.

Ah if it’s in print, your library might order it for you

Thank you for the helpful responses, I’ll certainly buy that book as I want to educate myself as much as possible. I also want to see how I can help DD.

I did the MCHAT as I saw it recommended to another poster on here and my DD scored really highly. My DS had an appointment with his paediatrician on Tuesday and she aside that when someone has a speech delay, they should have a hearing test first. So I’ll definitely push for her to have a hearing test when we see the HV.

Is it difficult to get your child diagnosed? Is it always best to get a diagnosis, does it always help them for the future? I just don’t know what I’m doing here!!! My son already has 100 appointments I just can’t believe my DD is most likely Autistic too. I feel out of my depth

You are right to get her assessed.

I have one son who had severe speech delay. This isn't as bad as it sounds. He qualified for NHS therapy but the wait was long so whilst waiting he had private speech therapy. It took a while but at 8 you would never know. He is a real chatterbox and very clear. As a 3 year old he'd be in tears because we couldn't understand him.

My other son was diagnosed at 6 with ASD, He is doing really well (now 10). He walks on tip toe a lot still and finds change and social situations hard but has done really well at a small school. He has friends and interacts with people he's familiar with fine (new people of any age are still a challenge). A diagnosis in itself doesn't necessarily get you any help at all but in our case it does mean he's on the SEN list at school and they give him extra focus and we get extra parents meetings to discuss how we and they can support him. He still struggles with some food textures but through very gentle encouragement now eats a wider set of foods. Routine is also key and he loves a routine!

You are right to get an assessment with the description you have given.
Obviously none of us can diagnose over the internet, but that is certainly a list that suggests you should seek further advice.

If a child has autism, it isn't "difficult" for them to get a diagnosis usually but it does involve long, long waiting lists in most parts of the Country (around 3 years here, sometimes) .

If they have a condition then yes, it helps for first you, and later them, to understand what the condition is, and it makes it easier to access help and advice, or sometimes, just to explain to others.

i think you are doing amazing to be pursuing this op. I was basically so scared that I delayed getting my ds diagnosed which did him no favours whatsoever.

I would ask GP for referral for diagnosis and you don’t need to wait for the two year check. The wait locally is three years.

When he enters nursery you can ask them to help you apply for an EHCP for him - these are brilliant as you can then choose any school you want and get any support she needs legally binding. I really wish we had done this as it takes time, so if you apply at 2 or 3 it’s all likely to be in place before primary entry. It’s supposed to be a twenty week process but as the local authorities reject lots of people in an effort to keep their costs down it can take 18 months, so well worth starting v early.

Is private SALT support an option for your family at all?

Sorry I know you have a dd - I’m obsessed with dses as mine are all boys!

My son was diagnosed at 2.

It does sound like your daughter needs to be assessed.

For us they looked across

Communication and play
Social interaction
Repetitive behaviours

He scored highly across all of them, it was very obvious to us.

A stim can be any repetitive physical movement like a hum, playing with a toy (my son rewinds his ipad over and over) - it's a soothing action for them and should never be discouraged.

I would 100% try to see if there are any groups locally, other mums can be amazing support as you navigate it all

Firstly don't feel guilty, there's nothing you can do and there's nothing you've done that's caused this.
Autism affects the individual in hugely different ways some are very high needs and have other difficulties and others much lower needs who cope fine and lead independent lives with coping strategies in place.

The only downside of getting a diagnosis is that it limits migration to some countries and limits some career options (military). The benefits of a diagnosis is validation for your DD that she is the way she is because of her autism. You can factor coping strategies into her everyday life and you can have appropriate expectations in your parenting and adapt that to suit her. You will know that she's not just being wilful or difficult when she does X, YZ but actually has unmet needs or is overwhelmed.
When she goes to school or work it will be easier to ask for reasonable adjustments as you have a diagnosis. If your DD has high needs autism then you can apply for financial support if you need to be a carer, blue badge if she is a bolter, mobility scheme if she can't manage on public transport or an access card so you and your family can still enjoy a day out at attractions.

Try incorporating sign language into your life, use Something special, BSL videos or just make up your own, it uses a different part of your brain to speech and means that if she picks it up it'll decrease her frustration as she'll be able to communicate.

Try parenting her like she has ASD whilst you wait for a diagnosis, ear defenders, sun hats, sun glasses, sun shield on pushchair can all reduce sensory overload.
If she is having a 'tantrum' try not to talk to her through it, turn the lights down, turn off any background noise, because that puts more sensory overload into the equation or if you have to use your best calm, audio book narrator voice. See if that helps.

Diagnosis for my teen would have taken 4 years on the NHS fortunately I had put money away as she was a quirky child but coped fine at Primary just incase she needed diagnosis as she got older which she did as soon as she started secondary and didn't cope well in the less structured environment. It cost £2.5k but she was diagnosed within 6 weeks of making initial contact with the clinic and was a much more pleasant experience than those that go through the NHS as I was footing the bill and they were impartial.

Thanks so much for the recent responses, they’re all so helpful.

We’re currently not in a position to go private and pay so we’d have to wait on the NHS. As she’ll be two in a few months, hopefully she can get a diagnosis (if she is Autistic which I believe she is) before she turns 5 or maybe 6.

She will start her SALT appointments next month and we only had to wait 6 months since originally being referred. Thank you to the poster who explained with stimming is! I definitely think my daughter does that at times.

Today their dad and I took both kids to a Children’s group today. DD was isolated from all the kids who sat in a circle as she wanted to play elsewhere and keep running up and down a stage at the back of the room (she loves the repetition). She started playing with a toy and one of the women of the group just snatched the toy from her in annoyance. I spoke with the woman and asked for the toy back and she was a bit startled as she didn’t think that I was watching.

It just made me feel a bit sad that she can’t even play by herself at group without a grown adult thinking she’s just in the way and taking a toy off of her. Even worse because she’s the woman who works at the centre so you’d think they’d be trained on how to deal with all types of children. Sorry, just a rant!

Do get her referred. I wouldn't wait for the two year check, as it's just unnecessary delay to an already long process. Just phone the HV.

I've got two DDs with ASD. DD1 wasn't diagnosed until she was 15 (she already has complex needs and has always gone to special school, so it wasn't prioritised) and DD2 was diagnosed at 11 (although I'd raised it when she was a toddler). DD3 has just been accepted for assessment at 14, 6 months after referral. I expect another 18 months before she's assessed.

Push hard. Your DD deserves it and you do, too.

When I called the HV to book an appointment, they told me that I have to wait until the 2 year health check. They said that if I really wanted to speak with someone then I should go to a walk in clinic to be seen by someone.

I went a couple of weeks ago with DD and guess what? I was told to wait until the 2 year health check. It’s so ridiculous, it was such a waste of time. As a pp said I’ll go through the GP which I didn’t realise that I could do!

Can I ask, how come your DD was only diagnosed at 11 if you had raised it with health professionals when she was a toddler? Was there a reason why it took so long to get a formal diagnosis?

Hi OP, I have an autistic daughter age 6. Referred at 2.5, diagnosed at 4.5 so before she started school. I know it’s not what you want to hear but there are lots of pointers for autism from your description.

This stage is the worse. The combination of not knowing and also the fact that you don’t know (I assume) much about autism. It will get better. Push for the referral from the GP. Gather evidence- like you have set out in your OP but keep adding to it.

You’ll learn about autism and how to support your daughter. All she needs is your support and understanding. The recent Chris Packham documentaries are good as is the Christine McGuinnes recent one all
on iPlayer.

When I was at the stage you’re at I drove myself crazy trying to do everything to help my DD. Following OTs on instagram and SALTs etc. don’t do that! You have enough on. Be kind to yourself. Seek support from those around you.

My advice is (over next two years)
-get referral, gather evidence
-get More Than Words book (this is great)
-listen to autistic adults, join supportive groups, look for local charities
-consider DLA application if not now then soon and definitely when diagnosed
-consider EHCP when she starts nursery

You are off to a great start by recognising this and getting a diagnosis early.

DD2 was verbal, although it has now emerged that she has an expressive language disorder. Her language was dismissed as 'cute'. Also, DD1 has complex needs, so when DD2 had meltdowns, she was deemed to be 'copying' DD1 by her preschool. In school, she didn't cope well but was cute and covered by smiling. When they wouldn't help, I moved her. Then the next school did the same, so I removed her altogether. Finally, school 3 realised there was a problem when they moved her class after 2 years (mixed age classes) and she completely shut down. Two year waiting list meant that she wasn't diagnosed until year 7. By year 10 she was avoiding school and ended up completely out of school. Now, in year '11' she is at a specialist school and is repeating year 10.

Thank you so much for taking the time to write such a detailed post, I really appreciate that.

I contacted the GP today but he was on annual leave so I’ll certainly try him again next week. I know a little about Autism as my son has a rare genetic disorder and he may have Autism when he’s older. It’s only when I was doing my research that I realised my daughter already had quite a lot of Autistic traits. I do worry that I’m not doing enough to help her especially as I’m so occupied with all of my son’s medical appointments.

Thank you for the documentary recommendations. I have BBC Iplayer so will watch them during my breaks at work.

So DD starts nursery next month and I can get the ball rolling with the EHCP then? For some reason I assumed that I had to wait until she was in primary to get that all sorted but I don’t have too? Will she get an EHCP even if she hasn’t been diagnosed yet?

Sorry for all the questions. After a year I’ve finally become clued up on my son’s condition but now I feel so out of my depth

@Lougle wow!! That all sounds so stressful and really difficult for your DD. She has a great mum who’s fought for her by continuously switching her schools until someone stops dismissing her struggles.

I really hope she’s enjoying her current school. You sound like you have your hands full with your children and their disabilities and you also sound really inspiring. Wishing the whole family all the best! X

So DD starts nursery next month and I can get the ball rolling with the EHCP then?

Not really. Nursery will need to have time to get to know her - some settling in time, some observations etc, then they will need to put support in, and evidence what support she has had. If you just put in a request when she isn't known to anyone, or even referred and on waiting lists, it will be turned down with a 'wait and see' reply.

For some reason I assumed that I had to wait until she was in primary to get that all sorted but I don’t have too?
No. Nurseries can apply for a Needs Assessment.
Indeed, anyone can - parents, or any professional involved with the child, but it will carry a lot more weight if the Nursery and the SaLT support the request.

Will she get an EHCP even if she hasn’t been diagnosed yet?
An EHCP does not depend on a diagnosis.
Indeed, a diagnosis doesn't automatically lead to an EHCP.
The assessment for the EHCP should be based on the child's needs. A diagnosis helps add weight to the application, but the waiting lists for diagnosis are notoriously long and the LAs know that and don't need to wait for confirmation of any particular condition. Some people get EHCPs without ever being diagnosed with a particular medical condition.
What they do need is some evidence of the need, which is why other people having the opportunity to get to now your child well, is really helpful.

Some specialist settings will take children for ‘assessment places’ for the purpose of drafting the EHCP when the needs are very clearly there.

Otherwise settings need to show they have sought external advice, acting on it, and still need further support.

One step at a time though.

Sorry just to clarify, I was only mentioning that she starts nursery next month. I didn’t mean that I’d jump right in asking if they could do a statement for an EHCP when they don’t even know her😂 it’s just good to know what’s available down the line.

I’ll call the GP next week and get the ball rolling via them. We’ll attend the SALT appointment next month and see how things go. All I can do is focus on both kids and try to help them as much as possible

All what @UsingChangeofName is right re EHCPs. But OP just take one step at a time. Focus on learning and getting a diagnosis for now and see how she gets on in nursery. There is a lot a good setting can do to supper your daughter without an EHCP.

I’m not an expert, just a mum, but my understanding is that you could definitely apply for an EHCP if you think she will need extra support at nursery. You don’t need to wait a specified period of time to do that, according to the leading charity advising parents in this area which is IPSEA:

”Parents/carers can request an EHC needs assessment for a child who is below compulsory school age and the only test the local authority (“LA”) must apply is the one contained in s.36(8) CAFA 2014. Sometimes parents come to our helplines because they think that a child needs to have been in school or nursery for a certain amount of time before an EHC needs assessment can be requested: this is not true.”

https://www.ipsea.org.uk/pages/faqs/category/ehc-needs-assessment-faqs

One of my biggest regrets is not applying for an EHCP for ds when he was a toddler, so I think it’s great you have this on your radar this early op.