2y8mo suspected autism - advice

[SErunner]

Hello. Our daughter's nursery have raised concerns in recent months regarding her behaviour. At a meeting this week they have said they suspect autism and suggested we start the process of referral for assessment. The NHS wait time is 2 years here. She will start school in Sept 25.

I don't disagree with any of their observations which relate to social/emotional development. On paper developmentally in other ways she is doing very well (they commented she is extremely capable cognitively, advanced with her communication, very independent physically). What I don't know is how much the behaviours they/we are concerned about are different to routine toddler behaviour, but I am happy to trust their judgement on this. They are obviously seeing something outside the 'norm'.

We are in the fortunate position where we could go private for assessment but I don't know when would be best to do this. Is it worth leaving it another 12 months age wise, but ensuring it's complete pre starting school? Would a diagnosis be more accurate/useful in terms of recommendations if she is a bit older? If an assessment does show she has autism, what then?

In the meantime I would love signposting to any good resources for supporting children her age (particularly girls) with suspected autism. As mentioned above, she is high functioning in many ways and doesn't present with things like speech delay, extreme meltdowns, poor sleep, etc. I am finding a lot of what I'm reading online is either about older children or doesn't really 'fit' in terms of how she is.

And help/advice/wisdom appreciated. Thank you.

A diagnosis doesn’t actually do anything - you don’t need it to gain any additional services or support that she may need.

depending on what the nursery have said she is struggling with, it’s worth asking them to apply for an EHCP to put additional support in place that will help her achieve her full potential. This way she will be assessed by professionals in the nursery setting who will be able to confirm and make recommendations as to what support she needs.

autism is such a varied spectrum - I don’t see my daughter at all when I see videos or accounts or the majority of “traits” so it was something I mentally battled against for a long time.

Thank you @valensiwalensi that is helpful. I didn't realise a diagnosis wasn't needed for an EHCP (this is all new to me). On the government website it says in relation to EHCP's that doctors assessments etc are needed? I guess my concern is a GP isn't going to pick up on any of the nurseries observations - at face value in a 10 mins consultation you would be none the wiser (she also masks well when around unfamiliar people). This made me think a more comprehensive assessment might be useful? Or are observations/evidence eg from nursery sufficient?

Nursery generally need to demonstrate that all the interventions or support plans they have put in place are not working (Ours is called See Do Review Change).
during the EHCP application the local authority will arrange assessments with the relevant people eg educational psychologist, occupational therapist and speech therapy.

because the wait lists are so long, a diagnosis is no longer needed luckily!

Have you spoken to the HV?

The only legal threshold for an EHCNA is a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. You don’t need a diagnosis, doctor’s assessment or 2+ cycles of assess, plan, do, review.

The vast majority of support in nursery and school is based on needs, not diagnosis. There are a couple of exceptions such as some autism specialist schools requiring a formal diagnosis.

Thank you both. I have spoken to the health visitor. They didn't offer anything really other than suggesting to go to the GP and ask for a referral for assessment. Can/should they offer more? Nursery are being very supportive and diligent. We have another meeting next week to discuss more about what they're putting in place to support her which will be helpful. I couldn't take that in yesterday so asked to have the conversation after the weekend once I'd had a bit of time to process.

I think we're at the early stages of this all to be honest, it's just quite overwhelming - I have so many questions and I don't necessarily know where to take them. I really appreciate your contributions and knowledge. Some of it is practical about how to support her needs, but perhaps nursery staff are well placed to advise me on this? Or are there other good sources of guidance?

In some areas the HV can refer. They can and should also assess DD’s development if you/nursery have raised concerns.

Once you have had the meeting with the nursery it is a good idea to follow it up with an email so you have a paper trail as evidence should you need it at a later date.

If you post some of the things you are wanting advice on posters may be able to advise. For education matters, IPSEA and SOSSEN’s websites and the SENCOP are good places to start.

I’d be curious to know what specifically they have concerns regarding the social and emotional side of things.

I’m now raising my toddler who is also possibly autistic, and has a significant delay in multiple areas which is why he has been referred, and to my understanding he needs to have autistic traits that have a significant impact on daily life for it to basically be taken seriously and diagnosed, that is, if it is in fact autism and not a developmental delay on its own.

looking back on my own childhood, there were clear signs for me being autistic that were all completely missed. I too was highly articulate, academic high flyer from the start but I’m pretty sure that I had issues around my social and emotional development. For instance I was very articulate with language and reading, but I don’t think I always understood everything I was reading or saying. It was always commented on how shy I was, and ‘lack of confidence’ in every single report card, though nothing was ever done to build my confidence or to support those needs. I was just a child with lacking qualities which inevitably made me feel low in the self esteem area. I also on many occasions did not know how to respond or what to say, and so the safest way for me to respond was by staying silent. I also had anxiety that I basically bottled up and had mild OCD that I also kept secret.

I think it’s really hard even today for autistic girls and women to receive help and support in understanding their neurodivergence, but there’s so much more knowledge on how autism often presents differently in girls too, so hopefully there will be more support offered to girls in the coming years.

I would say that if she has very good cognitive abilities, then she probably also has the ability to ‘learn’ about social and emotional wellbeing. Basically she probably has the capacity to learn to mask. I’ve done it for years and it’s less exhausting now, but I think at the time I could have benefited from some support showing how social cues work, and also been given an appropriate amount of time to take everything in and to be given the time to express myself. Understanding is also key I think because what I was always told was that I was lacking in qualities that I ‘should have’, whilst it would have been more helpful to know that my brain just works differently and it’s okay to be MYSELF.

With regards to my own parenting, having gone through school finding socialising hard myself, and the pressure ‘to make friends’ even harder, with my own son, I am not going to be putting that pressure on. As long as he’s okay and hopefully happy then I’m happy. It doesn’t matter to me if he isn’t very ‘sociable’. He will need to learn how to basically get along enough day by day. I think it also just takes longer for many autistic to socially mature in general. So patience and understanding whilst also pushing your child a little bit further outside their comfort zone is the approach I will take. Give your daughter plenty of opportunities to express herself and voice her needs.

Being cognitively able doesn’t always go hand in hand with ability to mask. Long term masking is detrimental, so isn’t wise to encourage learning to mask anyway.

And I would agree with that, although being female and on the ‘higher functioning’ end of the spectrum I’d say it’s just more likely, or more likely to be inevitable. Having lived through it myself, and still living through it, I would say that socialising just doesn’t come naturally, so if not mask then what are you supposed to do to get by? Like I said in my post I could have done with someone to support social and emotional learning from a young age. I was not giving the advice that the OP should encourage it, I was speaking from personal experience.

Females are more likely to mask, but that isn’t the same as ”I would say that if she has very good cognitive abilities, then she probably also has the ability to ‘learn’ about social and emotional wellbeing. Basically she probably has the capacity to learn to mask.” DC can be supported to develop socially and emotionally without learning, and encouraging, masking. Masking is harmful.

No I am not encouraging masking, but I do think it’s likely. And what’s wrong with learning about social and emotional wellbeing??

Where on earth did I say there was anything wrong learning about social and emotional wellbeing? Quite the opposite in fact. I specifically said “DC can be supported to develop socially and emotionally without learning, and encouraging, masking.”

”Basically she probably has the capacity to learn to mask” certainly sounds like you think learning to mask is a good thing.

“I would say that if she has very good cognitive abilities, then she probably also has the ability to ‘learn’ about social and emotional wellbeing.”

This is what I said in my original post, and then I mentioned that if she is autistic she’ll probably learn to mask, because speaking from personal experience as an autistic woman myself, I had to learn how to socialise, it did not come naturally. I also went on to say it was exhausting. I didn’t mean it to come across as it should be encouraged at all, however there will be situations where (if she is autistic and has trouble with social cues) where she will likely turn to masking as a way to socialise. I think social and emotional literacy is an important thing to learn for autistic people, but how that would be supported these days I’m not sure.

I know what you said, I have quoted your post in my responses. As I posted, DC can develop socially and emotionally without promoting learning to mask.

I did not ‘promote’ learning to mask, considering I clearly said it was exhausting and was just sharing my own personal experiences of it. I do think it likely however for autistic girls to do it. Misconstrue my post all you like. Hopefully sharing my experience of autism and masking is helpful to the OP.

I haven’t misconstrued your post. Posting ”Basically she probably has the capacity to learn to mask” certainly sounds like you think learning to mask is a good thing.

I see you can’t answer where I posted there was anything wrong learning about social and emotional wellbeing. That will be because I said no such thing.

It was you quoting my post when I talked of learning about social and emotional wellbeing as if I said something wrong, which is why I questioned it.

and just from my personal experience, whatever may be thought of it, I have found masking both exhausting but also helpful to learn how to socialise. That’s not me advocating doing things that way, just what I’ve found along the way.

I quoted your post in respect to masking. Absolutely nowhere did I post there was anything wrong with learning about social and emotional well-being, quite the opposite. The two are not the aren’t the same thing.

Here ^

Thank you for quoting that it. It proves exactly what I said. I explicitly posted “DC can be supported to develop socially and emotionally without learning, and encouraging, masking.” So, no, I didn’t post there was anything wrong with developing socially and emotionally. Masking (what I posted was harmful) isn’t the same as DC developing socially and emotionally (which I said could still be done without learning masking).

Yeah…no I was quoting you where you had quoted me saying exactly the same thing. I’m outta here, you’re not listening to me at all. Not worth my time and energy. Go pick on another autistic adult.

No, you didn’t say the same thing.

Disagreeing with you isn’t ’picking’ on you. BTW I am also autistic.

That explains it!!

My posts would be the same even if I wasn’t so it really doesn’t.

Your HV may be able to do the referral, ours did. She should be offering you support though.
For example, my HV came out every 2 weeks for a period of time just for a chat and to check in as I was abit wobbly to say the least. (Like you, felt very overwhelmed)
Did you speak to your normal HV? If so, I would ring the HV clinic and ask for some support.

As pp, ask nursery to apply for EHCP, they can also apply for funding to give DD some 1-2-1 time (can't remember the name of it but they will know)

An educational psychologist is also helpful and esp in regards to applying for a EHCP.

There is also portage, but this is for children under 3, so worth asking HV as you may get in before she turns 3.

A diagnosis doesn't change anything, she will still get the help regardless in whatever areas she needs.

It's very overwhelming and I do think scary at the beginning but things start making sense and when you see the additional help working it does take some weight off your shoulders.