Not telling your child they have autism and ADHD

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?

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.)

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.

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.

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

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..

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.

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.

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.

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.

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 .

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.

I think it’s a very valid question, those going through it now may be struggling with how to handle things with their child so hearing how others have done - and any long term impact of that approach - can be useful.

We didn’t tell our daughter for about a year. She was 10 when we did. Being a send parent is so hard. This doesn’t need to be a question on here

I have two autistic sons and we told them both. We didn’t explain during the diagnostic process (aged 7) but afterwards. My kids were already engaged with speech pathology and occupational therapy so were used to appointments so didn’t really ask questions.

Your post about the outcomes for autistic individuals who do and don’t know are really affirming to me because it shows that learning about yourself and engaging in therapy has a positive impact. Sometimes I just want to crawl into a cave and never do another appointment again.

I think I'd be more likely to tell my child in an age/understanding appropriate way, and give them some choice over who else knows about it.

I used to work with a young woman with autism and ADHD. She was diagnosed as a child and her parents didn't tell her or the school because they didn't want her to have a 'label'. She thinks her parents did the right thing. I am absolutely baffled by this decision, especially the decision not to tell the school. She almost certainly would have needed some extra help and also possibly would have been granted extra time in exams.

I don't agree with describing ADHD or autism as a label - because they are extremely significant diagnoses and saying 'label' sounds so dismissive.

Apart from the 'misunderstanding' that ADHD and autism are merely labels and carry stone kind of stigma, I cannot think of any reason why parents would not tell their child, especially an intelligent one. I don't believe children and young people today see any stigma in neurodivergence whereas a significant number of mature adults do .

I'm in my 50s and was recently diagnosed with autism and ADHD. Young adult DC2 was also recently diagnosed.

When is the plan to tell her? We waited a bit for them to be a little older, to discuss between us how we wanted to present it and to make sure DC (who can be a little rigid in their thinking) didn't interpret it as I am autistic so I can't do X and Y when actually although they struggle with it they are making lots of progress so I can understand a delay. We didn't though tell anyone else as that seems extra unfair and potentially risks the child hearing from someone else

I think its a shame. The knowledge might really help her progress.

Yes exactly. She'll be aware that she's been assessed, that there's some kind of problem that can't be talked about and will probably be feeling a lot of shame due to the secrecy.
You cant say anything directly but you might gently talk about the benefits for others of knowing about their diagnosis

The stats for those who know they are autistic and those who don’t/late diagnosis are shocking. Off the top of my head 9 out of 10 autistic women have been sexually assaulted. That figure drops among those who know they are autistic. Substance abuse and poor mental health worse in autistic women who don’t know compared to those who know. Can’t remember if it was just men or both sex’s but the male prison population has higher proportion of autistics/meet criteria but not diagnosed than not.

I don’t think you are unreasonable to feel as you do OP but it’s not our place to intervene for these kids- they are not our kids. I have told my kids and know it was the right thing.