Not telling your child they have autism and ADHD

[AuADHD]

My own child is likely autistic and ADHD and knows he’s on the pathway to be assessed. He also knows that I have both autism and ADHD.
I was talking to a school mum last week who had her daughter diagnosed privately. She hasn’t told her the outcome of the assessments and the child didn’t know she was being assessed. Her daughter is very bright academically but significantly behind socially compared to peers and really struggles. Frequent meltdowns at school and cannot cope with a basic school trip for example and will miss out on the year 6 residential. She finds school very challenging. She’s 9. My son is 10 and will be going to high school next year. The school has a SEND class of 10 out of the 1500 other students. It’s a massive school compared to the primary they are currently at. Her daughter went to the open day and was totally overwhelmed. There is no guarantee she would get a place in the SEND class which has students from all years and doesn’t follow the curriculum but focuses on life skills and tries to integrate them into the main school. I suggested that the local and excellent SEND school that’s only open to those with an EHCP which her daughter has might be an option. I’ve known the family since the daughter was 3 and it was obvious then she was autistic. Her parents refused to even consider assessment or the possibility until she was 7. Her mum looked at me horrified at the suggestion of the SEND school and stated her daughter doesn’t know she has any additional needs and said she’s too bright to go to that school. My friends daughter went there after struggling at primary and excelled in her GCSEs. It has small classes and excellent resources. I’d be considering it for my son but he doesn’t have an EHCP.
Am I being unreasonable in thinking that it’s awful that a bright child who is upset by her struggles and asks why she’s not like other kids doesn’t know she’s autistic and has ADHD? My view might be influenced by being late diagnosed and struggling through school and life and not knowing. If I’d have known my life might have been very different. I just don’t see the value in keeping something so important a secret.
Hard hat on seeing as it’s AIBU!

Threads is full of late diagnosed NDs who find out that their parents had them diagnosed but didn't tell them. They don't look kindly on that.

It depends on the child and how the autism impacts them my severely autistic son doesn't even know what autism is and is completely oblivious to how different he is compared to other kids his age .

A lot of parents are in denial about having a child with a disability, and when it’s a so called invisible disability they have the ability to remain so.

In my area, if you have an EHCP, you have to name the secondary school in the EHCP by March of year 5, which may be the reason they are looking early.

Thanks for the votes.

Some year 5s look round early. I think I did with my eldest. The mum told me looking round the school led to a complete meltdown due to being overwhelmed. It’s a massive place compared to their primary school and I feel sorry for this child who isn’t coping with primary yet is expected to attend a big mainstream secondary. Mum seems to tho k that because she’s intelligent she’ll excel at school. She also has demand avoidance and I can’t see how that will work in a child who cries over being told to do things and won’t wear the current uniform correctly. I don’t know if they’ll make allowances and allow her to wear a polo shirt but I’ve never seen a student in a polo shirt and I’ve had two dc at the school. They are strict on uniform. The kind that has to issue emails to permit no blazers or tights in heatwaves 🙄

This thread has reassured me that I’m doing the right thing in involving my Ds in his assessment process and discussing with him why he’s being assessed.

It sounds like this woman is failing her DD on many fronts - not telling her about her diagnosis, not explaining to her why she struggles with certain things and gets overwhelmed, not teaching her basic manners and self-awareness so that she is struggling even more socially than she needs to and is ostracised by her peers due to her rudeness.

She's also failing her by being so blasé about the primary to secondary transition.

Getting my AuDHD daughter to settle into a secondary required loads of school research and taking the LA to tribunal twice to get the most suitable school named on an EHCP.

I was motivated by knowing that it is extremely common for autistic girls to develop EBSA in year 7 or 8.

Also, I am a school teacher and it would most likely be the end of my career as it is presently if my DD couldn't attend school.

If your friend wants and/or needs to work, OP, you might point out that ignoring her DD's needs is potentially potentially a very risky strategy for her, never mind the DC.

She has social stories for every transition or activity like going outside of the school grounds although she often refuses to go. She has significant needs and school are very good at making adjustments for ND children. Dad is a wet blanket who doesn’t understand his child and leaves all parenting to mum. I suspect both parents are ND. She works from home but yes, that would be impacted by her Dd being a school refuser. She already says her child is unlikely to live independently when she reaches adulthood but she very much babies her which doesn’t help. Yes, she’s very obviously behind socially and emotionally but with the right input I don’t see why not.

Well at least she has gotten her assessed - compared to parents I know who ignored concerns, refused referrals etc. I’d worry about my own Sen dc and not anyone else’s as that’s all I can try to affect.

sounds like the mum herself might need an assessment..

It’s quite normal for secondary open days to be for those in Y5 as well as Y6 (and sometimes Y4).

According to some of the specialists I follow on LinkedIn - current studies suggest at least 85% of the prison population would meet the ADHD diagnosis threshold and the vast majority are undiagnosed and untreated when they enter the prison system. At least 50% would also meet the diagnostic criteria for ASD. Similar numbers also with co-occurring mental health issues.

The stats were shared by some activists whose sons died by suicide in prison and it was considered their sons’ lack of / late diagnosis left them more vulnerable and in fact their lack of treatment probably contributed to them ending up in trouble with the law in the first place.

also shocking stats about undiagnosed ASD & ADHD increasing risk of death by misadventure or suicide and abusing drugs and alcohol.

I can understand denial and reluctance to have a child assessed.

Some children won't have the cognitive ability to understand their diagnosis so there isn't a benefit in making them aware of it or not.

I can't understand why parents would go down an assessment pathway which has to be opted into and involves multiple stages, and then not make their child aware of its purpose and the outcome if they have the development to understand their differences and to feel the effects of them.

DS1 was 9 when he was assessed, the diagnosis was made in front of him (I wasn't expecting it that day and for the consultant to be so definitive about it) so we talked about it and what it meant on the way home and what it meant and have had an open dialogue since then. Being open about it (and his other diagnoses) from a fairly early age means he accepts it and reasonable adjustments connected to it better than if I'd withheld that information until a non-existant "right time". During the assessment process I'd told him that it was about finding out how his brain works- true and not biasing towards an outcome of which I was unsure of.

DS2 is asthmatic. I'd be negligent if I withheld that information and just let him belief that he's unfit and should try harder at breathing better. It would be downright dangerous. It would also risk harm to DS1's mental health to deny him the opportunity to understand his mental processes

I have encountered diagnosed children where parents have told care-givers and left the child to struggle in ignorance and it makes it much harder to adapt around the child's difficulties because it leaves a whopping great elephant in the room. You can't apply the adjustments that may be needed because you're left unable to treat the child differently according to their needs. Autistic children with high intelligence tend to like logical reasons, and the biggest logical reason in their life is being kept from them.

At 9/10 my DD and a friend told a boy in their year he had ASD. He had been diagnosed but they didn’t know that. They could tell and explained to him why he felt so different. (My DD is autistic, but also self diagnosed at 9 before getting an official diagnosis at 10.)

If you don’t do all the tours and transition evenings in year 5, how will you know which schools to apply for? Or did you just guess and hoped they felt okay when you visited after the application deadline?