Parents who refuse to pursue a diagnosis for their children

[emilybrontosaurus]

I am just wondering if teachers or others express a child may have neurodiversity and the parents just sort of sit on that information - why? And could this be considered neglectful?

@FoFanta is your daughter in mainstream?

It really hurts me ( maybe more than my son) that he is pretty much rejected socially in his new secondary school ( yr 7). He is saying and doing things they obviously don't like. It's horrible. I just want him to fade into the background as time progresses and pupils get familiar. There are clearly other ND kids there but that's not helping.

He's 4 and at pre-school not school yet and pre-school has no concerns.

OP just keep an open mind see what the teachers say how he gets on in school and read round the topic. If they raise even tentatively idea make sure you follow up and bare in mind the long waiting lists - so if there are concerns get on sooner rather than wait till late secondary.

Whilst Sen support in schools is supposed to be based on needs and not diagnosis, when you have high masking autistic children I've found many schools (certainly in our experience) don't believe they have any needs until you get a diagnosis. When they mask all day and meltdown at home they decide it's a 'home problem'. Getting a diagnosed and EHCPs is the only way we were able to get the right support in place.

I've been a teacher for decades and have an ND child. Some parents won't see the problem, either because the child is similar to them, so it's seen as normal, or because they have work arounds in the way they parent so there are no issues for them. Or they might see it as a terrible thing, feel ashamed and resist the suggestion. Some communities are very anti any kind of disability or need - may even see it as the judgement of God. Or they might see it as developmental and that the child will grow out if it.

There are many children in schools who exhibit ADHD or ASD traits, and most don't have a diagnosis. Some of these might be emotional difficulties born of trauma of some kind. Or bad parenting. These things are not always clear cut. Plus teachers are not experts either and can't make a diagnosis.

@Plastictrees

Dopamine and ADHD: pmc.ncbi.nlm.nih.gov/articles/PMC2626918/#:~:text=People%20with%20ADHD%20have%20at,and%20the%20regulation%20of%20attention.

ADHD and Parkinson's: pubmed.ncbi.nlm.nih.gov/32565043/

The latest ADHD research suggests that Parkinson's might be geriatric ADHD (to paraphrase).

DS1 has moderate ADHD and takes methylphenidate, it has a dramatic effect on his symptoms and his behaviour/focus/attainment is excellent.

Someone once told me that ADHD didn't exist and it was just childhood trauma, obviously we agreed to differ.

I think it could. It depends on how the child is behaving and how it's impacting on others.

I know social services became involved with another child because of his behaviour and because the parents were not engaging and he was attacking other children. He needed help.

He's a LOT better for it.

Schools will often block it, derail and gaslight. Or they may not have the expertise and jump to a feckless or incapable parent narrative.

I think one needs to just get comfortable with the idea in their own mind, accept denial is often normal and part of the process before looking outside for supporting voices or evidence.

You will find better validation and support speaking to other parents than the school based on my very unpleasant and isolating experience. I always say that mum's know best and it's a process facing the situation sometimes. As unpleasant as it is to admit, it can be a shock and it can feel hard to accept in the beginning. I think we have to be real about how hard it is for parents. ( Worse for the kids I appreciate)

Once you're clear in your own mind, you can then take on gaslighting, denial etc from the school. Without school supporting evidence, I feel assessments on the NHS may be difficult ( as was the case for us). My child has 3 obvious ND conditions and the school provided NOTHING. Private therefore our only choice.

I refer you back to my statement that restrictions on occupation are for safety or other good reasons. If the armed forces need service personnel not to be autistic then there is a good reason for that. Pretending that someone isn't autistic doesn't make them not autistic and the risk posed to themselves and their colleagues will still be there.

How selfish do you have to be to put your desire for a particular job above people's lives?

Yes that sort of black and white approach isn’t helpful - of course there are people/children with ADHD who haven’t experienced trauma! There needs to be nuance for sure.

The same as treatment options - there is no one size fits all approach.

Yes and No.
A friend’s son clearly had SEN, she would not accept it. School was a disaster, he left with no exams, hung around with a bad crowd as he was vulnerable and they took advantage, he got involved in drugs and alcohol at a young age. It took until his final chance with the Police for her to accept that he had SEN. I believe she was neglectful as she ignored all the advice, warning signs and support everyone had to offer and the help she would have received if she’d acted sooner. The poor kid was finally diagnosed just before he was 18.
However, I have three SEN children, two diagnosed, one not. I will not pursue a diagnosis as I know the system in our area and I know our school. It will be of no benefit to get a diagnosis. However, my child is aware that they have SEN and why they do not have a diagnosis. A diagnosis opens doors, in our area, these doors are bolted shut. I do not believe I am neglectful as the minute my child’s circumstances change, should they, I will push for a diagnosis to get the support they may need.

She is in a main stream secondary school in the Republic of Ireland. They have only this year opened an ASD room which has been great for her . She barely attended school last year (second year) but cos the support is in place this year, she is going in and does some classes in mainstream but most in the ASD room. She has no friends at school, but does have some friends outside and attends a monthly group for autistic teens, which she really enjoys.

The lack of connection with her peers at school definitely hurts me more than it bothers her. In retrospect I can see how hard I worked when she was in primary school to make sure she was invited to parties and play dates, by making sure I was friendly with all the Mums. When it was left to the kids, she just couldn't keep it going herself. Now that she knows why, she is a bit easier with it.

@InformerYaNoSayDaddyMeSnowMeIGoBlameALickyBoom One of my friends has decided to take this route with her son (17) He had an EHCP at school and plenty of educational support ( some provided by the school, some paid for by his parents), but his parents have been cautious about pursuing diagnoses (he is diagnosed as dyslexic though). He’s now doing well in an apprenticeship, has interests and friends.

I think his family have decided that they’ll always provide and source the support that he needs, and that seems to work for him. As long as he’s happy and thriving.

The dopamine issue is so so apparent to me with my son who is AuDHD.

He is continuously seeking dopamine hits; food, experiences. It's actually something I find distressing to watch. I'm pleading with his father to agree to a medication trial. Something we can only consider now we have a diagnosis.

A diagnosis could be very useful in many cases however can limit future opportunities having a diagnosed disability. Increased insurance premiums, lower level of care from NHS etc.
Other areas like sex, race etc which face discrimination are harder to conceal. Invisible disabilities might be less obvious, but having a diagnosis means often having to disclose that to officials/bosses etc when it's not necessarily in my best interests and if it isn't then I am forced to lie on forms etc

Same for us.

@FoFanta thanks so much. That sounds exactly like me in primary. The work was all mine and incredibly difficult but it sustained friendships and social engagements for some time. Your daughter's school sounds pretty good! If she's doing ok then that's all that matters.

I really want to try separate my own issues from child's as I think I'm more bothered about it. I think I have a few negative emotions I really need to work on.

I tried initially but with Covid and school failing’s,information and forms kept getting misplaced so we went to the bottom of the pile again,I haven’t bothered since,a diagnosis can’t change who is.

I cannot get life insurance at all because of my self harm and suicidal history. I'd gladly swap that for a childhood autism diagnosis leading to better self-understanding, not being given harmful treatment by CAMHS, and increased premiums.

Given the reality of the very long timeframe I would kindly suggest starting the process. It can take two years by then you may feel differently but at least you are not starting at that stage.

At the very worst you decline the offer and someone else gets a step closer quicker.

@emilybrontosaurus it isn't your parenting. That feeling is all part of this process. Many seem to take some pleasure in blaming 'useless parents'. You only need refer to the various threads on MN to see this happening a fair bit.

I think it must depend what area you are in, I only waited a year for my ADHD assessment and I only waited 7 months for my asd assessment. Did both mine via right to choose, ADHD was with ADHD360 and asd was with asdaxia

Is this post for me???
have I called anyone neglectful or terrible??
🙄

Some of you might be interested in this webinar with Naomi Fisher:
https://www.eventbrite.co.uk/e/understanding-autism-an-introduction-for-parents-tickets-1083966826959
She's a psychologist and she's great, I've done lots of her webinars as they are always helpful and validating.

It's not the diagnosis that stops you being in the armed forces. It's the medication. Adult DS thriving in the armed forces has ADHD. He is allowed to have ADHD, that's not in itself a problem. He's not allowed to take medication largely because it is not likely to be available on a frontline. So if he were dependent on medication he couldn't deploy and thus join up. But as he can cope without and has done for many years, all is good.

I work in a school and currently have a Year 3 child, who clearly has ND issues. The poor child has moved school 4 times, because every time the schools bring the subject up, the Mother becomes defensive/difficult and moves schools. She won't accept there is an issue with her child, at all. I'm no expert, and support staff, rather than teaching but within 5 minutes of meeting the child, it was plainly obvious. In my opinion, yes it is neglectful because it's the poor who will suffer at the end of the day. It makes life very hard for the child, and as they become older, it doesn't get easier, it only gets harder.