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

Hello

We have an ehcp for nursery. The local authority kept trying to deter us but we applied before he was in a setting. I absolutely knew he would need significant support and I wasn't prepared to have a "let's let him try and fail approach " which is what my local authority seems to do. We got it and he stated a good nursery school with it. Incidentally they said they couldn't have taken him without it.

You get so much bad advice sadly that's why I recommended seeing if there are any local groups. I only really trust other mums to be honest.

You're doing really well 🙏

Sorry to clarify, my son will need a specialist school, he does have high needs. I'm not suggesting all children need it. Just knew mine would find nursery very hard.

@doadeer you did amazing getting that - very impressed!

By the way op there are Facebook groups on EHCPs which are really good to join - there is one for the whole of England and usually one for each local authority as well eg “EHCP in Surrey”.

Mine had significant speech issues on entry to nursery and real difficulties with social skills and emotional regulation. Needed a lot of adult support. In hindsight I think we would have got one.

I haven’t much to add because you’ve been given really good advice already but I just wanted to say that your DD is a lucky girl to have you as a mum. You’ve recognised a need really early and are being proactive about seeking support . You may need to advocate for her more than other parents do over the years.
Secondly, it’s ok to be sad but autistic kids are just as amazing as other kids, they’re just different. My DD is 17 and i wouldn’t change a single thing about her - she’s awesome! I’m not saying the road is always easy and I would change the world around her to be more understanding and accepting.
Learn as much as you can about autism but your DD isn’t 2 yet, you’ve loads of time so don’t put yourself under pressure.
Good luck

Just to explain in case it’s helpful, my ds never had any big tantrums or meltdowns at home before starting nursery as we knew his needs and were able to make sure they were met. What caused him problems in nursery and led to massive meltdowns is that nurseries tend to have rigid routines of what happens when and because he is autistic he couldn’t always flex to their set routine. He needed them to flex to his. Have you asked for a meeting with the nursery SENCO?

That’s so good to hear. I’m glad you were able to get it in time for your DS to start nursery.

Can I ask, when you said thar you knew he’d need significant support, what type of support do you mean?

I’m just wondering because I don’t necessarily think my DD needs 1-2-1 support or more support than others. I just think they need to be aware of her potentially having Autism because she struggles to do things socially and her listening isn’t great!

Aw thank you so much for this really nice comment!

I don’t think I’m sad because she may be Autistic. I’m sad because I have a son who’s 11 months younger than her. He has a genetic disorder and is under the care of a paediatrician, neurologist, physio, OT, dietician, ophthalmology and we’re currently waiting to start portage and speech & language. We literally have weekly appointments for him!

So now to think DD may be Autistic and the focus has been all on my son, I just feel a bit stressed that I may have failed her in taking so long to realise. I also have no clue how we’ll manage with two young children when one already has a severe disability and the other seems to have a development disability!

I haven’t spoken with SENCO as I literally came to the realisation that she may be Autistic like a few weeks ago😅

She’s only doing three half days a week so I’ll see how she gets on at nursery. If any issues arise then I’ll of course speak with the relevant people. I do think I need to take it one step at a time as pp have suggested

My son is non verbal and he doesn't have an effective communication system so he gets easily frustrated and hits. He doesn't like people are children in his space so he will just push them out of the way. He's easily stimulated so he needs a room he can go to when it gets too busy. He has poor danger awareness sometimes and has PICA which means he eats soil and sand so needs to be watched constantly.

Even after 7 months he can only manage 3 hours before he wants to leave. He will take the staff to the door and will get very upset and attack them if they don't let him leave.

This might not be your little one... Basically a formal setting is not an environment that my son enjoys at all and I wonder if he ever will. He is 4 now

Op I completely understand the need to take it one step at a time - I did things incredibly slowly because I felt so incredibly overwhelmed and distressed. I got diagnosis at 10 and am only getting an EHCP now at 11.

I would flag with SENCO anyway even if it seems early days. I had to take my ds out of his first nursery setting pretty quickly as they were being impatient with his inability to manage their transitions eg coat on when they said so, food when they said so and he got very distressed.

@doadeer ah right I see, I completely understand what you mean. For some reason I thought an EHCP is only to outline 1-2-1 support for a child. However it seems like a formal document which can explain their struggles and can mention things like them getting easily stimulated and needing their own space at times.

I’m just about to look into it properly as I know my son will definitely need one so it’s helpful to know for DD too. Thank you for sharing your child’s experience, wishing you all the best x

@MissHavershamReturns I totally get what you mean, thank you!

I would ask for a referral to a paediatrician rather than ask for an autism assessment.
Can you check with your genetics team to make sure you son's diagnosis doesn't have any possible links with the issues your daughter has?

The first step of an ASC assessment in this age will be an appt with a paed.
They’ll do any necessary blood/genetic/other tests then.

Then it will be the team assessment for the actual diagnosis. This might be several weeks later.

Yeah I was planning on asking the GP for a referral to paeds so the referral it isn’t just Autism focused.

When I spoke with my son’s geneticist team when he was first diagnosed they said that my daughter won’t have the same condition that my son has. They had a look at my son’s DNA and saw that a chromosome had randomly mutated which didn’t come from myself or their dad.

It may be worth getting her checked out just to see if somethings randomly happened with her DNA. I wouldn’t be surprised if we were unlucky not once but twice with their genes randomly mutating!

Thanks for raising that point

Possibly, do speak to your doctor/health visitor. BUT both my DD's were like this, the elder is autistic (she gained full speech at 4, very bright, at university but plenty of issues...) the younger was on the same trajectory and at 15 months was put into an experimental early intervention programme, however at 2.5 she started to talk and is "normal" though is dyslexic (also very bright, top university etc).

I'm trying to say get professional guidance but also keep in perspective and try not to worry too much

Op thank you for those kind words! I’m sure at some point you will be on a thread sharing your own experience whichever way things go.

An EHCP can include speech therapy, social skills help, OT to assist with any issues on the physical side or sensory issues, extra support for transitions etc etc

Hi again OP, you have not taken “so long” to realise. She’s not even two. That is very young for you to have spotted a potential issue. You are doing amazingly. You have two babies, one with additional needs. Give yourself a break and a pat on the back.

Push yr HV and GP for a referral, in some areas it takes 3 years due to the backlog, so get sorted as soon as u can as u want it sorted b4 they start school.

I totally agree that you need to take this one step at a time. I think you are doing brilliantly to spot that she may have ASD before her second birthday.

Also agree that she needs to be seen by a Paediatrician.

I just wanted to mention that if she reaches 4 and she still hadn't had an Autism Assessment, you can get one quite quickly through Caudwell Children.

We got a diagnosis of ASD for our daughter who is 4 a few weeks ago and are going through the EHCP process at the moment, hoping to have it in place by September.
We raised concerns with the health visitor just after her second birthday, so nearly two years to get the formal diagnosis although we were pretty sure by the time she was 3.
The diagnosis seemed to be a joint effort between her pediatrician and SALT.
With our daughter what caused us to really think seriously that she was likely on the spectrum, at 2 she suddenly lost what words she knew and didn't really speak again for 5-6 months.
Her nursery consider her non verbal, but she does speak a little at home mostly copying words we use.
She also has a real fear of new adults so needs a lot of time to adjust to new people.
We are trying Pecs cards and photos of items she might want to help with communication.

You have been given some good advice here. Waiting for the 2 year HV check is too long given you have concerns and the waiting time for referrals is often long. These checks are typically done at 27 months, so quite a way off for you. I would call your HV advice line if you have one and press for a meeting with a HV. Also, the nursery should do a 2 year old progress check too for learning development and they can make referrals too following this, like the HVs can, so do ask them about when they will be doing this when your DD starts.

OP, I notice that you’re now working with Portage for your son. They may also be able to informally advise and signpost services for your DD - I know that they will have been assigned for your DS’s special needs but they take a family approach and are very well informed about local services available for children with SEND.

We are with portage after my son had very challenging behaviour at nursery for a long time that caused them to (initially) ask us to take him out.
DS - suspected ASD, we have applied for assessment via paeds thanks to Portage.

Among other things, Portage recommended us to a playgroup for children with communication differences, which is run by the local specialist school as part of their outreach. Through this service we have access to additional support such as parent training, and we are building a network of other parents of children with communication difficulties.

it might also be worth speaking with your Local Children’s Centre about your concerns and to enquire what services are available.

Thank you again for all of the comments, everything has been so helpful.

I will call the GP on Wednesday as that’s when I’m next off of work and hopefully get the ball rolling🤞

That sounds like a very sensible plan. Let us know how you get on