If your daughter has an autism diagnosis, what were they like as a young child?

[WowsieWoo]

Just looking to hear from anyone with a daughter who has received an autism diagnosis later on into childhood/teens. What were they like as a young child eg as a baby/toddler or in nursery or early primary school? When did you first suspect they had ASD? Are there always signs early on?

The only thing we really noticed before primary age was sensory related and epic toddler tantrums. She's always struggled to wear shoes and socks. Looking back now, she was quite controlling of her environment. I distinctly remember her refusing to get into the car aged about 3 until she'd seen me load her doll's buggy in the boot.

The wheels fell off when she started reception, though school didn't see anything still. I couldn't get her dressed in the mornings, shoes and socks always uncomfortable (to the point where she wore flip flops first thing). She did a lot of collecting and containing type of play (packing toys into containers). She had one to one intense relationships with children, didn't do well with group play but was still very socially aware and motivated. Her intense relationships resulted in lots of challenges. But school said age appropriate and 'exacerbated by Covid'. At home she exploded, at school she was very compliant - coke bottle effect. It all culminated in school avoidance in years reception, year 1 and year 4 (current). She got an autism diagnosis two weeks ago, aged 9. It's been a long, exhausting battle getting people to listen to us. Turns out she masks extremely well, which of course we always knew.

Thanks so much for your reply! Hope you (and she) are adjusting okay to her diagnosis.

Looking back at my DD, there was nothing at all before the age of about 5/6. She was totally normal, met all milestones, if anything really advanced, chatty, friendly and confident, no tantrums, no obsessive interests. We probably see more tantrums now she's older to be honest! Mine definitely doesn't mask and never has done! Lots of problems at school with behaviour/concentration and friendships. She is desperate to have a best friend but the other children find her annoying and her interests are probably more immature than theirs now.

She was assessed for autism four years ago at schools request but found not to have it. Dr reckoned it was anxiety but school aren't convinced!

How is your DD doing now? School avoidance must be very hard to manage. Although mine hates school, she goes in no problem usually.

Was your dd assessed for adhd when she was assessed for autism? Did her report highlight any adhd traits? Is that something you've considered?

Dd hasn't attended school since before Christmas. She's extremely anxious/ recovering from extended shutdown. It currently affects functioning across all areas of her life as she's not accessing even the things she used to enjoy, such as gymnastics. I'm hoping that the diagnosis will provide her with a better understanding of herself.

That must be hard for you, and for her. It's so hard to see them anxious at a young age, particularly if they aren't enjoying things they previously used to love doing. Are you able to access any support for her? What does she enjoy doing now?

To answer your question - no, she's never been assessed for ADHD but we think it's increasingly likely she has it. School just keep repeating that they think it's autism and want her reassessed but I can't help thinking that autism is either something you have or you don't. I don't think you can develop it over time, but I could be wrong. We saw nothing at all early on. Am concerned about putting her through the stress of more assessments now she's older and more aware of what's going on. She just wants to be like everyone else her age.

Should add, she does have dyspraxia, so not sure how much of her behaviours now can be explained by that, as opposed to anything else.

Adhd is comorbid with dyspraxia in around 50% of cases, so that's definitely worth considering.

Neurodivergence in girls can become much more noticeable around school age as social and academic demands increase. Therefore it's entirely feasible that you wouldn't have noticed anything in early childhood, but symptoms seemed to 'appear' around school age.

Dd's development trajectory was the same as your dd's - eye contact, conversation flow, expressiveness, confidence all well evidenced, met all milestones etc.

I understand what you're saying about not wanting to put her through another assessment. But honestly, the wheels can come off quite spectacularly if her needs are consistently unmet within an academic environment. I'm sure you're aware that mental health problems are extremely common in undiagnosed neurodivergent girls.

Support for dd has mainly been through her ehcp which we fought to put in place even without a diagnosis. Her school avoidance was born out of her unmet needs within that environment. They'll add autism to her ehcp now, and are applying for extra funding (she was only on the baseline level).for more autism friendly interventions (things like visual supports to aid her verbal comprehension because she struggles to process verbal instructions quickly which adds to her anxiety). And she's attending online therapy sessions with other children of her age and ability who are also struggling to attend school. Once she's completed the course, if her anxiety remains high then we may need medication to bring the level down enough to engage in everyday activities, but they won't consider that until other anxiety management strategies have tried and failes. Eventually we'll seek a phased reintegration to school when she's ready. At the moment though, I'd settle for a family day out.

You can't get a diagnosis for Autism if there are no autism behaviours during pre school years. That's not possible for Autism to appear that late in life. It's much more likely your daughter has ADHD. What you describe sounds like ADHD. E.g. 'problem to concentrate' is not a characteristic of ASD but ADHD, as is difficulty regulating emotions and filtering words and impulses, what can sadly be perceived as 'annoying" behaviour. Difficulties in social situations for ASD, especially in girls, manifests more as excessive shyness, avoidance, preference to play alone and engage in repetitive games or if they annoy, it's because they insist to talk about or engage in a specisl interest. Now, some 'repetitive play' and 'special interests' can look 'normal', e.g. for a young girl an obsession to play with barbies. But it would be more playing 'dressing barbie, or combing barbie's hair' than playing role plays. It's also often the case that ADHD can go together with autistic traits and the ADHD masks them, so it might not be apparent till later in life e.g. that a child needs routine because the ADHD also makes them seek novelty.

Sounds like more adhd and not autism. I can’t see how you wouldn’t be able to see any traits otherwise. I suspected when she was a baby. I knew at age 3 and was told by the public health nurse and age 5 diagnosed and out of school as she could not cope. So many traits and sensory issues. My other girl I think she has adhd and she doesn’t mask anything. Zero behaviour problems 0-3 then has increased from age 4.

@Whatafustercluckyour replies are so helpful. On this thread and also another one about sensory issues I just saw.
Can I ask how you identified the issues in the school environment that were causing the overwhelm? My dc (year 1) had burnout last year in reception, and I don’t think has fully recovered.

We’ve had a steep learning curve, private assessment (inconclusive due to lack of evidence in reception, but were told certainly ASD, pda, anxiety, behavioral issues. We’ve had CAMHS input (just for parents), OT assessment showed clear sensory processing issues (now waiting for clinic sessions), on wait list for reassessment nhs.

I’m concerned about another burnout, I don’t know what else we can do in the home environment, we have adjusted our family life an incredible amount. Very low demand. Yet the levels of avoidant behaviour are so high. Refusal to leave the house at the weekend, dressing issues, just managing getting to school, no extra curriculars. Restricted eating, toileting issues, at times refusing to wash .

So it feels like there needs to be more adjustments at school. How do we advocate for this, would the nhs OT observe in school, or would an EP do that?

Teacher is now seeing some avoidant behaviour when it comes to learning. She says there are movement breaks, but it’s clearly not enough. My gut is that it’s sensory overwhelm and also an avoidant anxiety reaction to the learning demands

We applied for an ehcp, which meant that she had access to the EP who did some cognitive tests with her. He noted that performance anxiety was likely a factor that was driving a fair amount of fear of making mistakes - hence some avoidance to tackling schoolwork. He also noted that despite her very strong visual memory and pattern recognition (well above average), her verbal comprehension/ processing speed was below average. This was never apparent in school due to her being seemingly articulate and, at that point, meeting expectations academically.

This aspect was actually pretty 'undersold' unfortunately, and it was only when she was recently diagnosed that we were told this is a very common pattern in bright, capable autistic children - strong visual memory, slow verbal processing. If you think about the classroom, this puts them at a considerable disadvantage because the vast majority of teaching is delivered verbally. It requires very complex executive functioning to receive information, interpret it and translate it to action. Especially in a busy classroom environment where sensory processing issues may well be playing a part in preventing signals getting to the brain due to sensory overwhelm.

Does your dc have an ehcp in place? At this point, I'd advise getting that in place while your dc awaits assessment on the NHS. This was sufficient to help dd in the earlier school years (2-3 years with no burnout) but as she was on the lowest level (social, emotional, mental health) it became insufficient when academic demands increased beyond her capacity (Y4). At that age, social expectations require a level of nuance that autistic children struggle with more so navigating friendships and group dynamics can become more problematic.

You're absolutely right to consider that your dc has unmet needs at school when you've made all the necessary adjustments at home and you've seen limited impact.

So so helpful thank you. I’m sorry to hear the extent of your child’s struggles and the toll it must be taking. I feel at my wits end.

What you say makes total sense. I imagine there is performance anxiety there, it’s hard to separate all the different issues from one another. The pda complicates every aspect of life. I think the anxiety and sensory overwhelm are fueling the pda. The tics are also quite pronounced at the moment. The teacher and OT have already predicted things worsening as learning demands increase, and continuous provision reduces/ ends in year 2.

I will get on the EHCP, it’s been a little cloudy in my mind as school haven’t mentioned it.

It sounds like school are on side, which is half the battle in our experience, and bodes well for your success - even if they haven't provided much guidance in the way of an ehcp. They do tend to try to put parents off applying by saying it's unlikely their child will get one in place because needs can be met within the existing funding arrangements. We had push back in this respect and were told it would be unlikely without a formal diagnosis. This was rubbish because an ehcp is needs based. But if the school are noticing things, then they'll be more supportive - particularly with OT evidence too.

Check out sendiass for support with the ehcp, an invaluable source of information:

https://www.sendiass.org/?gad_source=1&gad_campaignid=22667730429&gclid=CjwKCAjwspPOBhB9EiwATFbi5FCymjOnYZeyzk6vZQVZA09tOwbyjqMzlilw-PXYC2jZJeSGhPaBmhoCdVYQAvD_BwE

Yes, this is what I thought too. I suspect things are getting worse lately as she approaches puberty - think this is the peak age for ADHD.
It is so hard to tell the difference between ADHD, autism etc. I've no idea how the experts differentiate!

How are your girls doing now?

This makes total sense, thank you. There was absolutely nothing to suggest autism early on. No special interests at all - she has a broad range of interests and loves trying and learning new things, meeting new people etc. She has become more shy with age but I put that down to age, feeling more embarrassed and self conscious.