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!

Why is a 9 year old going to an open day at a high school? She won’t be going for 2 years as she’ll only be in Y5 at the most currently.

Look, they know their daughter better than you. I'm not sure it's worth your headspace really.

They have done the responsible thing getting her assessed. How they handle it now depends really - they may have an approach they are looking to follow with their child.

I have AuDHD, late diagnosed like many women my age. Of course I wish I could have been assessed as a child or teen - life would have been so much clearer and less confusing. But I sometimes think that wish affects how I see ND young people now.

My own DD is showing some ND traits at 8. We have gently started the assessment process. What I have told her so far is that we will have an appointment so a doctor can learn more about how her brain works. That there are lots of different kinds of brains, and some are really good at one thing but need help with other things, and it's useful to have that information. That mum has a brain that's called autistic, which means I am very good at x, y and z but battle with a, b and c, and that it's useful to know that so I can practice those things or avoid them, depending.

I don’t think it’s your business.
my 10 year old son is on the waiting list for an autism assessment. He is not aware he might have autism nor that he will be assessed.

He’s quite happy in his own skin at the moment so I don’t know how to tell him that he’s a bit different to his friends. I don’t want him to think he’s odd or not normal.

So I’ll wait for the assessment and discuss with a professional how to tell him in the right way.

Her Dd is actually asking why she’s struggling with things so much. It seems a disservice to me to not tell her the truth but yes, they know her best.

My son was diagnosed at 3, we just always talked about it to normalise it. So he just knows he’s autistic and that’s fine. I think making it a secret or doing a big reveal would surely be more anxiety inducing for a child.

It’s normal for parents to go to open evenings during year 5, especially in areas where there is a choice of schools. Open evenings are generally during September and October so waiting until year 6 doesn’t always give long before the deadline the end of October to decide.

I find it hard to see how a child who has some understanding of things can go through the diagnosis process and be completely oblivious to what is going on!

I have always been open with DS (within his understanding) about his neurodiversity and his medical conditions. They are all part of what makes him him so he needs to understand as best as possible.

As someone with a disability (Cerebral Palsy, but very mild) I cannot fathom why you wouldn't tell your child they have a disability. I mean I guess it's vaguely possible that an autistic child wouldn't recognise they were different to their peers because their autism would prevent them seeing it? I knew when I was 2 and was very thankful that my parents begun to explain it to me in a child friendly way then. The differences between me and my peers have always been there. It I hadn't known why I could keep up I imagine I would have had a horrible life.

You can't tell her instead of them, but I can't see they are doing right thing.

Yanbu. I told my son he had autism when he was old enough to see the difference between him & his peers. He goes to a sen school now and loves the fact hes autistic. Wouldnt dream of keeping it secret.

I wouldn’t dream of saying anything to her child.

As a late diagnosed adult I can honestly say knowing this information would have saved me a lot of trauma and abuse. That said, the knowledge wasn’t around when I was younger, this kid will surely put the pieces together before long.

Exactly. My son would have asked so many questions and I don’t believe in lying. I can’t see how a child “too bright for a SEND school” can have been oblivious to the purpose of the long process. The assessor at my son’s first appointment explained to him what the next assessment involved and what they are actually assessing.

The labels that she and others will attach up her ‘weirdo’ ‘quirky’ ‘freak’ are far worse than the explanation of knowing ‘I am autistic. I have adhd’

the feelings of ‘failure’ at not fitting in with peers and socially are much better mitigated and understood when you know and accept how you tick,…

their child - their choice - but personally I feel you go a child a great disservice and set them up for far greater MH issues if you ton’s tell them their nd diagnosis and help them up embrace it fully as who they are…

sounds like a lot of denial and ignorance in this family - so many people still think specialist education is only for severely physical or severe intellectual impairment. When in reality some very very bright autistic children thrive in the right specialist provision when their sensory needs are met and their learning styles embraced, but will fail in mainstream not because of their intelligence levels but because it is too big and to inflexible to meet their needs.

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.

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 poor kid has no friends at school or outside of school. Always alone at break according to ds. He did try and be friendly but her behaviour is intolerable to him due to his own sensory issues mainly and the fact that she’s just so rude and won’t accept no as an answer. I think her mum believes that someone with autism and ADHD can’t be taught manners and should never have their behaviour corrected or challenged.For example waiting for the train together she said my phone was a waste of money and said the same about something special to ds upsetting him. Her mum didn’t challenge her at all. She will literally push herself into people’s space then her mum just says the child not happy with her behaviour and saying no is being mean. Secondary will sadly eat her alive. I’m worried about my child managing at secondary school. I think Im actually feeling angry with this mum for setting her child up to struggle through life more than autism and ADHD would make it difficult anyway.

I think the feelings of failure are very close to home on this and maybe why it’s upset me. I’ve gone through life wondering why I’ve failed at most things compared to what I was capable of. On the surface I'm
successful but I’m nowhere near where I could have been. I’d hate anyone else to experience that. Each to their own but I know my own children won’t be operating under false pretences. I’ll be giving them everything I can to help navigate the world taking into account their disabilities. It’s not nice knowing I’m disabled and that my children are too but it’s fact. I try not to think of myself of lesser because I’m different but I feel lesser when faced with things I struggle with. I’ve experienced burnout as a child. No child should suffer that.

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

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 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.

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 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.

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 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.