I think my DD has ASD but no-one else is concerned

[WorryingForNothingMaybe]

She’s 8, Year 3 – going into year 4 in September

• Can’t tell me anything about her friends literally I’ll ask her about present ideas before a party for her friends and she’ll say “I don’t know what they like”
• Has always had speech issues still struggles to make herself understood especially when tired or ill
• Didn’t fully toilet train until she was nearly 7
• Has lots of “friends” but moves between groups a lot at school – I know this is normal to some extent but the rest of the class seem to be settling into groups even if they’re still very fluid whereas DD seems to move between them and not really attached to any particular child or group she seems much more on the periphery of the groups if that makes sense
• Was late to meet all physical milestones
• Struggles with reading and writing
• Gets confused about whether it’s my weekend or ExHs weekend (this may be because he only has her for 4 days a month)

School had some concerns but not about ASD, had someone come in to assess her (I think for dyslexia) and she did so well in the assessment the assessor had no idea why DD was there, her speech was perfect, she read everything really well and was able to remember information when asked. School said it wasn’t a true reflection of her abilities but their hands are tied as they can’t push for further assessment as the previous assessment threw up no issues (even the assessing lady said it was unusual as she had samples of classwork and videos of DDs struggles in class and they did not match up to the assessments but she can only take evidence from the assessment).

School have not mentioned anything at all since those assessments and she appears to still struggle a lot in class with little help.

Council rejected the EHCNA based on the previous assessments and I feel like I’m going in circles with it, even Ipsea said it’s quite usual to not do the EHCNA if there’s no evidence it’s needed.

The only thing that’s making me think it’s not ASD is because:

• she doesn’t appear to mask – there are no major meltdowns we get the occasional tantrum
  before the first day back at school because she doesn’t want to go back but they seem to get better when she realises nothing has changed and people remember her

• she seems to cope well with change and actually looks forward to the school holidays,

• she’s not a fussy eater.

• Does appear to have strong interests like her activity groups but doesn’t talk about them excessively and can have conversation diverted when you try to, so she might be telling me about how she got her badge at Brownies and I’ll ask her what she had for lunch/dinner and she doesn’t seem to phased by it and tells me what flavour yogurt she had for pudding

• She has made some friends (according to her)at her activity groups but can’t tell me their names

Does this sound like a normal 8 year old? Or should I be worried? I’m not sure if covid has maybe affected her social skills so I’m seeing things that I wouldn’t of before.

There’s a history of ASD in my family (not me) so I do get concerned about it.

Bumping as it's now on second page

Can you afford a private diagnosis? We just got one for 18 year old dd .

Could be lots of things going on there. Can you afford a private educational psychologist assessment? They check a broad range of things and can pick up likely diagnoses and therefore where to go next. Can also pick up the detail of what they are struggling with which can help with accommodations.

Sounds a bit like a mix between my two DDs who have dyslexia/dyspraxia. You may find that issues become more obvious as she gets older.
(My youngest passed a dyslexia screening test at 11, but now has a formal dyslexia diagnosis. )

I can’t offer much in the way of help as it’s so hard to say without knowing the child and I know it’s so frustrating as a parent feeling like you don’t know where to turn. I would suggest having a look at the Neurodiverse SpLD Checklist and going through it as honestly as you can then sharing it with the school SENCo. It might help to highlight your concerns or it might reassure you. It’s based on the idea that not all children who might be struggling in school for some reason will fall into a ‘label’ and actually these needs and diagnosis overlap just as children are unique. Good luck

It's quite common for girls to be diagnosed at a later age, 16/17

I would look at how your can support and meet her needs as she is now regardless of diagnosis. A diagnosis doesn’t open magic doors unfortunately (as I’ve found), but it gives you more clout occasionally asking for “reasonable adjustments “. Keeping a diary of her struggles. You have to keep pushing for support in school if that’s what she needs. I’ve had to suggest things, like movement breaks, typing instead of writing up in neat, clear written instructions if given verbal instructions to whole class.

Instead of asking for a adhd assessment I wonder if you could ask for a referral to a paediatrician to discuss your concerns.

Focus on late to meet milestones, struggling with reading and writing. Could she have some learning difficulties rather than adhd?

My problem is no-one else is bothered, school have said she passed all the assessments so they can't send her for others, council won't do a needs assessment due to the assessments school paid for showing nothing.

She literally scored perfectly, like a child that they have no concerns for at all, school where as shocked as I was because classwork doesn't match up to the assessments.

As an example on her Year 1 phonics screening she scored 3 out of 40 (pass mark was 32) when school repeated the test with her after the lockdowns (so end of Year 2) she scored 2 out of 40, but during assessments she scored 40 out of 40 on a very similar test, made herself understood perfectly, and read the sentences perfectly. Yet when we've repeated it outside of the assessments she's failed.

School have taken all support away due to the assessments showing she needs no help, but then say in her report her handwriting is poor, she needs support with speech and she struggles with reading.

I can't afford a private assessment, I looked into it and just to get the initial 2 appointments is over £600. Will look into a paediatrician.

Her current teacher is the Senco/Deputy Head and next years teacher is lead of literacy and knows DD but school say their hands are tied due to the assessments that where done earlier this year.

We paid £2700 for our daughters which was worth it to us .
I had no idea she has ASD as it was never flagged until she got I'll with depression , anxiety and anorexia . It was questioned during some therapy that she may have ASD and so we decided to get an assessment done .

If I had of known I wouldn't have put her through ms secondary because in hindsight she cousins cope socially . She is very bright and academic so managed to go under radar .
The only reason we did it was so she will get extra help at uni!

"School have taken all support away due to the assessments .......school say their hands are tied due to the assessments that where done earlier this year."

This is utter bullshit, you are being lied to and fobbed off. Ask GP for Paed referral. Ask school for meeting with Senco. Tell her everything you've written here. Ask for it to be reinstated. Tell her about GP referral. Ask for it all to be put in an email so you have a written copy, a 'paper trail'. That will put the willies up her and she'll know you are serious!

Get this thread moved to SN section and Your'll then get proper advice and support.

@Oblomov22 Her current teacher is the Senco and it was her who said they couldn't offer support anymore, apparently the school support plans are "tempoary" until a diagnosis and they have professional strategies to help.

I have appealed but school they only let it run for another half term then took it away anyway, without my signature to say it's being signed off because they don't need my permission apparently.

@gunnersgold I'm glad your DD got support but £2,700 is way out of my budget, I'd have to work for 3 months and not eat or feed DD or pay any bills to earn anywhere near that

That's fair enough , you can get on the waiting list which is around 3/4 years because of covid delays .

Op, my dd was diagnosed with asd and adhd at 14.

Thinking back to when she was 8

She was bright at school. Knew her times tables in y2 but would never finish a times table test (couldn’t concentrate)
She would sometimes get a mental block and get 0% in a test yet sometimes would get 100%
Appeared unusually stubborn when she didn’t want to do something
Had a close group of friends
Was late to toilet training (many accidents in school and night time nappies until year 2)
obsessively climbing and swinging everywhere
forgetful, often telling me the day before a play or cake sale that I needed to do something
Frequently losing school uniform
hated doing drama performances
The odd meltdown when I couldn’t get through to her, it was like she zoned out, a problem was so big she couldn’t listen to me try to help her with logic
Frightened at parties and loud discos / cinema
Flexible / not obsessed with routines
Obsessed with certain books / interests (eg Greek myths / dragons / knowing all the countries in Europe)
Appeared to be confident, met eye contact

I kept thinking she would mature but the demands placed on secondary school were too great and she couldn’t cope.

So superficially she looks fine but inwards she has social anxiety, struggles to make new friends, cognitive rigidity (very strong unbending opinions), needs a lot of time at home chilling out, some obsessions and weird hobbies, very restricted diet of bland food, some demand avoidance plus lots of issues with disorganisation.

Plus she has a sister diagnosed with autism and a dad who’s most likely autistic so it really does run in the family.

So I would just do lots of reading, the stereotypes of trainspotting, can’t get eye contact, needs routine and structure isn’t always true, especially with girls but even my GP said ‘she’s got eye contact there’s nothing wrong with her’

Sorry about my lack of punctuation, my phone kept changing my capitals and I just didn’t want to lose that lengthy text!

It would seem like your daughter was masking in the session to assess sen eg dyslexia?

Sensory issues? Over or under sensitive? (Eg may chew stuff, not like loud sounds, like watching the washing machine)

Social/communication : the friendship issue she has but look for misunderstandings, specific pedantic use of language

Routine based stuff. Same cup, specific amount of milk on cereal, eats food in the same order, has a bedtime routine that must be followed

Does sound like there is some neuro diverse answer to this. There are many ways to have processing (of all the many kinds there are) problems, and that maybe classed as autistic, but even if she isn't, there is obviously something going on for her.
Schools vary a lot on this topic. They all have to have a senco but the quality of their knowledge varies as does the support they have to do what's best for the child. In some school it's almost a tick box exercise and in some they invest far more than the minimum.
I wonder if she's not particularly attached to the school and others are in the area whether it's worth checking out if any others nearby might take a more nuanced and pro active approach to her individualality.
My dd is 'quirky' has some tricky bits, her school go above and beyond the minimum to her and support her (as they do all the children of whom several are neuro diverse one way or another) that's just the culture of the school and we got lucky. The head is passionate about it.

@BlackeyedSusan sorry just seen this one so will reply

Sensory issues? Over or under sensitive? (Eg may chew stuff, not like loud sounds, like watching the washing machine)

She likes heavy clothing or no clothes, won't wear buttons as she says they're too hard to do. Doesn't like the hoover or hand dryers, but is fine with the washing machine.

Social/communication : the friendship issue she has but look for misunderstandings, specific pedantic use of language

She definitely misunderstands things but I'm not sure how much of that is her delayed speech or her mishearing (she had hearing issues as a toddler but was discharged with no treatment as it improved on her own will look into another hearing test) so for example today I said "I'm going to clear the back of the sofa" and she asked me why I said "Why are you bagging up the sofa?". There doesn't seem to be specific use of language though.

Routine based stuff. Same cup, specific amount of milk on cereal, eats food in the same order, has a bedtime routine that must be followed

She does like her routine but more so she knows what she's doing, she copes perfectly well if I say "Sorry we're out of cheerios until I go shopping do you want toast or cornflakes?" and she'll choose, but she does get confused if given to many options or asked to choose something without options, so if I'd said "What do you want instead?" she'd have said "I don't know" or "Nothing".

Her bedtime routine changes once a week due to activities and she finds that fine and as far as I know her routine with ExH is completely different and she's fine there if a little confused when he does things differently, but no meltdowns, it'll be more things like "Dad puts his milk into his tea at the same time as the sugar" rather than anything major.

@TopCatsTopHat I can't move her school unfortunately, because there's a child arrangements order that gives ExH visitation and he holds PR then it's local council policy to seek the permission of everyone with PR and if even one doesn't agree they won't move the child. ExH doesn't want her to move school.