Frazzled Mum - 4.5 year old girl autism?

Hi, As someone who was only diagnosed at age 25 and who had no idea she could be autistic before then, I would highly recommend getting a diagnosis early. I wish I had been diagnosed sooner- I think it could have saved a lot of upset and allowed me to cope better. It's just good to know- as your daughter gets older she will probably begin feeling more and more that she is different - at least that was what it was like for me. My mum was great in making me feel positive about being 'different' when I was young but the older I got the more marked the differences were and it was hard to deal with- I felt at times like I just needed to try harder etc. and I struggled. Also I think if I had known about being autistic I would have been a lot kinder to myself and maybe I would have learnt at an earlier age how to manage my energy levels and avoid burnout... instead I just muddled along, doing well academically but then struggling more and more with mental health as I got older- I collected lots of diagnoses... none of them properly fit. I now realise I was struggling from burnout at times but I had no idea that was what it was- I kept trying to fix things which probably were just not something that can or should be fixed. It made so much sense when I realised that I might be autistic. When it was first suggested, I initially dismissed it thinking that I really did not need yet another label.... but when I started reading about autism in women it made so much sense - then came the confusion/imposter syndrome phase. But overall I think it just really helps to know. 

Also I think it is just useful to have an official diagnosis in case later on your daughter does need more support whether at school or work or in other ways. And as it takes a long time to get a diagnosis it's risky to wait until you need it. It would give you more safety to have the diagnosis. And if you don't want to, you don't have to tell anyone. It doesn't have to change anything but it is just useful to have.

That's my personal opinion based on my own experiences. 

Update - Had the meeting with the SENCO at the school yesterday and they were so very helpful and supporting and are going to do everything they can to support us and Elsie.  Although she doesn't show such issues at school, apart from having problems moving from one task to another, their view is that she is likely to be on the spectrum and will continue supporting her as if she is. For next steps, do we go down the diagnosis route? 

Schools shouldn't let toilets get like this. It's not sanitary for children regardless. I can't understand why they wouldn't keep on top of them, but sorry you had to experience that.

EH123 TBH I was just remembering a time I was "encouraged to go" and couldn't find the words to explain to a teacher something like "it's okay for you to say "go to the toilet" you get to use the staff loo used by adults that (presumably) don't wee on the floor. And I'm not gonna stand in another kids wee just so I can do my own. Also even when clean, the loo is cold and echoey and makes me too stressed to go." Obvs I can explain that now, as an adult, but as a kid it was like playing a sick game of lets find out which happens first meltdown because holding it is uncomfortable and this is making me stressed or wet myself and then have a meltdown because that happened.

Actually, I just want to add. Negotiations are about Connecting with another through an optimistic exploration. I don't engage with people I don't trust or who I sense don't really care about my creative thoughts. We live in a world that seems to not enjoy questions and excavations, yet this is at the heart of analytical thinking: "I wonder if..."

Throughout my life, those who I feel the deepest respect for are those who hear my responses and explorations as a type of exposure of vulnerability, which is needed to be creative and facilitate close relationships. Reasoning through anything is one of the most humane and kind things one can do. Some philosophers position this exercise as the most evolved trait in someone. But it can just be a different way of perceiving the world.

When I was shut down by the parent who didn't understand my reasonings, it felt like a betrayal. It didn't matter if the thing I wished for or wanted to explore didn't happen. It was that my non-autistic parent, my mother, couldn't understand my desire to connect this way and she would not only shut it down but take offence. Later in life, I discovered questioning her pushed against a sense of inadequacy and failure, which was unbearable for her, but unfortunately, since I could never have a heart-felt discussion, it drove a wedge between our relationship. My father (undiagnosed, but it's his mother I tend to take after) would hear every negotiation and respond with things like "help me understand what you mean". We have a much closer relationship. It's partly his frustrated inability to make sense of things at times that actually made me want to articulate better, expand knowledge, study more and explore deeper. 

All children are different. 

There's a noticeable pattern I'm seeing. 

First, with using the toilet, "encouragement" doesn't always make sense. Many of us have difficulty with interoception, so we need to simply be walked to the loo, have a sit down and give it a try. Every 2 hours is "simply a bathroom break" regardless of whether we think we need to go. As this becomes habitual, that will help us become more aware over time. I used to simply walk my young son to use the toilet every time before we left to go somewhere. "Just amuse me" is one of our family mottos (don't do it for you, do it for me, please).

As for these 'battles', I'd begin to treat them like Negotiations. Assume you are rewarding her thought-FULL-ness on each thing. To one degree, you may be encouraging a potential solicitor. She could have an excellent natural inclination toward a career on a legal team someday and you will want to raise a woman who expects to be respected but is open to talking through things. 

Sometimes non-autistic individuals can misrepresent our ability to see life as a wealth ot things to negotiate and analyse. When this perspective is welcomed and encouraged, children can thrive. They will feel a sense of agency and respect and will then afford this to others. You may need to help her learn to say, "I'd like to negotiate please" or something that will eventually help others recognise that she's not competing socially, but simply exploring options. Most things in life are not matters of grave consequence. 

However, with chocolate toast, health is not an issue as this is allowed at a particular day. What overrides this is that it is a thing to mark Saturday or part of our Sunday. It's not a part of today. Sometimes children crave chocolate when they need iron, as well. So if it comes up, perhaps beef meatballs could be on the menu.

Change the term battle to Negotiation, Exploration, Adventure in your perspective. See if this changes how she then responds to you!

🐝 Bees 🐝 (they/them) Autism resources in bio #stoptheshock #NothingAboutUsWithoutUs said:

I don't think those are limited to just girls tbh. Generally though you could be describing me in my childhood there.

Thanks for your advice.  Some really good points in there. I used the pizza chat yesterday and it worked! I am starting to log her meltdowns so that we have a journal - in case she masks so well at school that the SENCO says there is nothing wrong with her. 

Since yesterday afternoon I already have:

• Came home from school with wet knickers, even though the teacher had been encouraging her to go every 2 hours.
• Meltdown when I chose the wrong knickers for her.  Refused to wear them.
• Meltdown because there were no orange biscuit bars left for pudding. Went absolutely nuts and wouldn't listen to the fact that we had none left.
• Finally agreed on a bowl of grapes.  I cut some up and she told me to stop cutting; so I put the last one in the bowl. This then set her off because I put it in after she had told me to stop cutting anymore.
• Once calmed down, she started eating them and asked for more, even though she had loads left.  I explained that she should carry on eating the ones she had, and if she finished and still wanted more, then I would cut some more up. She wouldn't listen and just kept saying the same thing over again. Another meltdown, and she hit her nose on the floor in the process. 
• Moved to the lounge - meltdown over having to sit on the rug to eat the grapes (she knows no eating on Mummy's fancy sofa!) I gave her a big cuddle to try and calm her down.  She stuck her comforter in her mouth and this seemed to do the trick.
• Battle getting ready for school.  Refusing to let Daddy brush her teeth.  Eventually persuaded her.
• Breakfast - gave her, her favourite cereal that she has been having everyday recently.  She went crazy as she hadn't asked for it.  She asked for chocolate spread on toast.  I explained that we only have that at the weekend, as it isn't very healthy.  Meltdown - climbed onto the kitchen worktop from her barstool, screaming, thrashing around, blew snot out of her nose.  Very angry.  Eventually we managed to agree on porridge, and she sat down like nothing had happened. Note to self - always ask her what she wants for breakfast rather than assuming!! 

How is it possible to tell whether this is bad behaviour or Autism related? I have another daughter who is 3 years older, and we never had these issues so i'd like to think my parenting is ok!? 

EH123

EH123 said:

First step in the process is in progress - her teacher has arranged for their SENCO teacher to observe Elsie in class.  We then have a meeting at the school with her class teacher and the SENCO teacher to discuss further in a weeks time.  I strongly expect that they will not see a whole lot of what we experience at home, because she masks so well. But will be interesting to see. 

If they need more evidence maybe you can give them a list of observations like you just mentioned as I strongly recognised my own chilldhood traits as you described in your post, and I was diagnosed way back over 20 yrs ago when they knew even less about autism than they do now.

EH123 said:

First step in the process is in progress - her teacher has arranged for their SENCO teacher to observe Elsie in class.  We then have a meeting at the school with her class teacher and the SENCO teacher to discuss further in a weeks time.  I strongly expect that they will not see a whole lot of what we experience at home, because she masks so well. But will be interesting to see.

If it might be of any use ~ there is a paper called "Putting on My Best Normal"; Camouflaging in Adults with Autism Spectrum Conditions ~ that explains (and diagrammatically presents) the masking process and could help as such to better format how you assess your daughter's behaviour and therefore help the assessment process whilst your at it, possibly.

I don't think those are limited to just girls tbh. Generally though you could be describing me in my childhood there. The good news is that some of those behaviours is actually a result of anxiety second hand from the ASC itself, and that means they can be improved with healthy and compassionate coping techniques. If I engage my own memory for a moment I can run down the most likely mechanism behind a few key points:

EH123 said:

Struggles when things don't go as she expects. Very rigid in her expectations - easily throws a tantrum when things don't go as she has planned.

We teach children from day one that they should have a routine then when they take that literally we scold them for being "inflexible". Which flows into the point about hypocrites next.

EH123 said:

Follows rules/processes religiously and will point out if anyone is not following properly.

She has a good sense of fairness, and expects everyone to be held to the same standard as she is, and especially not be a hypocrite if the person breaking rules has been one to bring them up before. "Do as I say not as I do" is anathema, and causes anxiety.

EH123 said:

Very sensitive to smells - often talks about smells and tells people they smell or highlights bad smells. 

Again we cannot teach children to adhere to a behavior in this case honesty and then scold them when they are honest. White lies are a social skill that is often learned later in autists if it is at all.

EH123 said:

Doing well at school. No concerns there, but they have been working on her understanding of emotions for a while now as she struggles with regulating her emotions.

Seems to potentially mask at school, then explode when she gets home. 

This usually results from background stress at constantly trying to live up to the fluctuating expectations of everyone else and then some how "failing" too regardless.

EH123 said:

She will get fixated on baking a cake for example, and will not forget it and will go on about it constantly and no amount of explaining why we can't do it that second helps deflect the situation. She will then get really angry and not listen or understand what we have said. 

She has literal thinking, if you don't want to do it now, don't say nebulously "later". She wants that structure to feel secure, so set a date/ a timer/ whatever and then stick to it and do the promised activity. That will help.

EH123 said:

Went into the poundstore as she wanted some bath crayons.

"Mummy, where will they be?"

"I don't know Elsie, we just have to keep are eyes open and look out for them" "But Mummy, I don't know how to do that, I can't stop blinking"

Again, literal thinking, try to avoid nebulous phrasing that can confuse her and, introduce similies and metaphor later on when other language skills develop. She is still just year R and a lot of kids aren't linguistically profient at that age either, autism or not.

EH123 said:

Food wise - she is ok at eating but she changes her mind about what she likes constantly and if I chop her toast in the wrong shape, or give her the wrong coloured plate - all hell breaks loose. I think at nursery they used to ask that she at least tried the food, so now when I say she hasn't eaten enough dinner yet she fixates on the words "But I tried" thinking that means she has had enough. The other day - I said, you must eat 5 more pieces of chicken - she got one piece and broke it into 5! So cheeky, but her logic is incredible.  She saw a You Tube video that said pizza was unhealthy, so now she won't touch it.  I also say to her "Make sure you eat your chicken as it makes you grow" She has decided she doesn't want to grow, so now won't eat chicken. 

She's still developing preferences which is very natural for any child just she is doing it though an autistic rather than allist lens.
She's also clever enough to figure out how to bend rules without breaking them, because she neither wants to do a thing nor get in trouble for it. That's top tier problem solving and tbh I think you should encourage it.
Have you thought of explaining that things said on TV is just junk so she knows to be healthily skeptical about the things she's told? Ie, it's not that eating piza is unhealthy, it's that eating nothing but pizza is unhealthy, etc?

But really, remember she's just 5, she's not gonna stay like this when she's 25.
I used to be a lot more rigid until I slowly learned I could do whatever I want (within reason, I've not robbed a bank) and the sky wouldn't fall down for it, and that the social rules of non autists are just silly games to be played to keep the interactions smooth.

EH123 said:

Deepthought said:

Oh ~ and just as matter of caution, the third community rule states:

Thank you! Totally missed that. Now changed :-)

Nice one! Image wise and all.

Also ~ just as a follow up to your listings and JuniperFromGallifrey's rather splendid explanations ~ the thing about addressing the same thing repeatedly, is basically because the many facets of the situation or situations being considered, which also involves different states of mind disengaging and re-engaging until the neurological networks integrate effectively on the matter in question ~ with an overall conceptualisation eventually getting arrived at.

Some states of mind will sometimes find particular explanations incompatible and just shut down, with another taking over as a compensation, keeping in mind we autistic types tend to contemplate the nature of things rather than just blindly asking about them and being content with the answer ~ particularly if fitting in socially is not something we are particular good at in terms of just going along with the normative social flow, which often involves social exclusion and the need to be somewhat cautious about knowing the ins and outs of being included or excluded.  

Basically, just as there are seven colours, seven notes and seven crystals, there are seven states of body and mind as being rational, sentimental, communicational, emotional, imaginal, reproductional and sensational sensibilities, so repeated questions will involve the mechanics of which until they have got the issue sussed, unless of course a restriction or obstruction (i.e., an inhibition) of reasoning has occurred ~ so knowing this can help us to navigate our explanations to better facilitate, identify and affirm their reasoning process or processes, particular if we can help them suss things out in three goes or else enjoy the journey of going through the sensibility spectrum with them, perhaps.

First step in the process is in progress - her teacher has arranged for their SENCO teacher to observe Elsie in class.  We then have a meeting at the school with her class teacher and the SENCO teacher to discuss further in a weeks time.  I strongly expect that they will not see a whole lot of what we experience at home, because she masks so well. But will be interesting to see. 

Deepthought said:

Oh ~ and just as matter of caution, the third community rule states:

Thank you! Totally missed that. Now changed :-)

EH123 said:

Purchased, thank you!

Oh I am so glad ~ it would have made life so much easy if that book had come into my mother's possession in the seventies, what with all the frazzledness going on and all that for me as well as everyone else.

EH123 said:

I'm all for educating myself, whether she turns out to be on the spectrum or not. (I obviously suspect she is)

I think your suspicions are very much indeed warranted.

Oh ~ and just as matter of caution, the third community rule states:

Profile pictures/avatars and usernames should not use full names or images of real people. They should not include the NAS logo or include the word ‘Mod as this profile is used by the moderation team. If your profile does not comply with this rule, you may be contacted by our moderation team to request an amendment or your profile or avatar may be reset.

Hence we all use singular or alternative names or nick-names along with abstract representations of ourselves or images we prefer otherwise to be identified by ~ mine for instance is that I am into metaphysics (the philosophy of addressing the meaning and purpose to life; the universe and everything) and that I can spend so much time contemplating or communicating about it or something in particular that I get stuck up to my neck in things that I should have otherwise gotten done!

Deepthought said:

You might find reading The Complete Guide to Asperger's Syndrome by Tony Attwood particular useful as it addresses everything you have described, and explains the developmental norms from preadolescence to p

Purchased, thank you! I'm all for educating myself, whether she turns out to be on the spectrum or not. (I obviously suspect she is)

You might find reading The Complete Guide to Asperger's Syndrome by Tony Attwood particular useful as it addresses everything you have described, and explains the developmental norms from preadolescence to post adolescence that those of us with Asperger's Syndrome (otherwise known as Type 1 Autism involving minimum support requirements as compared to Type 2 (moderate) or Type 3 (severe) support requirements) tend to need ~ to lesser or greater degrees ~ at least initially.

The better we are facilitated, identified and affirmed in respect of our individuality in our earlier years ~ the better we do in our later years, which is as much true for those of us who are neurologically divergent as it is those who are neurologically atypical or typical.

If the suggested book is too much of a manual ~ there is the simpler version called 'Asperger's Syndrome: A Guide for Parents and Professionals' by Tony Attwood again, which might be a more viable read perhaps.

Thanks everyone for your replies.  It is really helpful to read your opinions and experiences.  Today I have written to her school teacher to share my list of quirks, and to see if they are noticing any issues in class.  I'm pretty certain she is masking very well at school, but her behaviours at home are certainly getting more challenging! 

With the list as you've written it, it sounds like you've done a lot of reseaech already.  You're right, these are all things that could be indicators that she's autistic.  You also spund like you understand her and are patient woth her differences.  All I can say is keep it up, you're being a great mum.

Good advice already given. I see a lot of familiar things which we have come to get used to and realise that they won't change.

It can be hard work as a parent when small things can cause a lot of distress. Some things you get used to. My advice would be to find times to relax to recharge your batteries so you can cope at difficult times in supporting her.

Hi, It does sound like she could be autistic. It might be a good idea to ask your GP to refer her for diagnosis- you could even take the list you wrote here to the GP to help get referred. I think it is helpful to have a diagnosis in case she needs some support at some point for example at school and it is just good to know- I was diagnosed only recently at age 25 and I think it would have helped me a lot if I had known sooner why I was different. Your daughter sounds lovely- wishing you all the best!!