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?

The grief is very difficult. Watching how much a diagnosis has benefited my DD has made me incredibly happy for her and at the same time, heartbroken for child me.

I've spent a lifetime hating myself, wondering why I found everything so much harder than everyone else, thinking we all just acted every day. I've had most of the comorbidities that come with ADHD/ASD, been depressed on and off for years, developed anorexia as a way to try and control how I was feeling because everything else was out of control. Doubted myself constantly because I was constantly told my way of thinking was wrong ect. I think life could of been a lot easier for me had I known sooner, I would of spent less time hating myself and been able to support myself better. I'd of been able to support my children better.

Instead, I'm in my 30's, having to deal with all this new information about myself and I'm having to learn about my child too. Me being undiagnosed had a negative impact on my children. They havnt had the mum they should of had.

My biggest fear has been my children growing up feeling the way I did. I feel relieved that their probably not going to now, they have a really good chance of living a somewhat normal happy life and developing the coping mechanisms they need along the way

It’s possible that the parents completely trust the school to handle the situation.

That’s a good point. However, without a proper diagnosis, kids will not receive extra school support, extra funding, perhaps even certain benefits etc.

Interestingly I had this conversation with my MIL today as we are seeking and ADHD assessment for my son.

She's totally against it and doesn't want us to label him as 'it will follow him for the rest of his life'.

My own sister has just been diagnosed with ADHD at 40+ and lots of things I never 'got' about her make total sense now. She now understands herself better and understands why some things she struggles with. I don't want my own child to struggle through life and not understand himself which is why we are going for an official assessment. But we someone be discussing it with him until he is older.

@Powderblue1

MIL refuses to accept DS1's AuDHD diagnosis. That generation don't give medical issues affecting the brain the same credence as 'physical' issues. There's also a stigma surrounding 'labels', which I don't understand.

Ask her if she'd be 'aghast' if he were diabetic and needed treatment.

That’s a lovely read @1billionthtimeivenamwchanged and I’m really happy that it’s been such a positive experience for your dd.

Thank you for your post. I completely agree with everything you just said.

We literally just had the meeting with the Ed psych yesterday after their assessment of our DS for autism.

It’s taken two years since the referral from the community paed and we were seeing her for 2 years before that.

We are in the very fortunate position of already having an EHCP. We are also lucky to have a very supportive primary school and relationship with teachers.

Everyone in the meeting clearly agreed that our DS has many autistic traits and it was extremely helpful to us as parents to hear the Ed psych say that in their opinion, DS definitely meets the diagnostic criteria. (We’ve never been 100% sure).

However, no support comes with this diagnosis and no treatment.

Two benefits were articulated by the Ed psych and I have doubts about both:
1- it will help DS understand himself
2- it is a “short hand” to help teachers understand his needs.

On point 2- our DS really does struggle with some aspects of academic work, but this is due to innatentiveness, lack of working memory and attention. I’m sure that autistic traits related to perception are a factor but it is dwarfed by the other non-autistic cognitive issues he has.

He does not meet the criteria for ADHD though. Already been tested for that (Qb test) and this Ed psych agreed said he doesn’t display the impulsiveness and definitely no hyperactivity.

So we’re not sure that when the Ed psych report goes back to the paed that we will agree to the diagnosis of autism.

It’s not that we haven’t found it useful to know the particular issues/ symptoms he has of autism. It’s extremely helpful.

BUT, when people see an autism diagnosis, they are going to put his learning issues down to that and give it more weight than it needs. When actually the main cognitive and learning issues come from inattention.

So in our case, an autism diagnosis might counterintuitively negatively impact the support he requires for his NEEDS

On point 1-, has anyone actually conducted a systematic, peer-reviewed study to show that a diagnosis DOES in fact, improve one’s understanding of themselves/sense of self/mental health or any beneficial outcome?

I can see how it could work for people and it is certainly the prevailing mantra in the ND community.
but the truth is that the majority of people are NT and due to lack of resources, certainly only a minority actually get diagnosed.
So if you have negative feelings because you feel “different” , how does being told you are different (from the majority) help?

I think it’s important to be very clear that you can receive support in school, funding and benefits without a diagnosis. (You can also feel accepted and like yourself but that’s another story) It’s important because people might feel they can’t access these things without a dx and it’s important because people might seek a dx they wouldn’t otherwise choose to take thinking that was their only avenue.

I worry a little about the idea that a child experiencing difficulties can hang all their self worth on the idea that it’s “because ASD”. To me it’s a bit like the magic feather in Dumbo. While it might be a useful tool to give confidence, it seems a flimsy thing to build yourself on.

I’m afraid this is absolutely untrue and a common misconception.

please see my example a few posts above this one

True, i know several families whose children are yet to be officially diagnosed but still have things support into place at school for them and get DLA.

My DD has been recently diagnosed and the amount of support we have gotten has massively increased, but prior to the diagnosis school did try to accommodate her as best they could

That is great news for your DD, yes I think it can help a lot of people, (although not essential), especially if you don’t have an EHCP.
It is yet more evidence to add into an EHCP application too.
Glad your DD is getting more support now.

This is really interesting and we were in a very similar situation (though in our case it was communication that dwarfed the autism).

What I would say is that profiles do change as children get older and so it would be worth thinking about how helpful the dx would be if your child’s ability to focus improves or gets worse and also how he would compare to a child who has that profile without autism. I think people are well intentioned when they insist a diagnosis will bring a flood of positives but I think that’s because they often lack a level of understanding of parenting more complex or just very different situations than their own.

The main benefit of diagnosis really is no longer having to discuss diagnosis. You can move forward from is he, isn’t he, are the parents “in denial”, blah blah and so you regain a lot of useful collaboration time in meetings etc. That is balanced by the negative of dealing with other people’s understanding of what autism looks like and what “helps” autistic people. That’s more problematic if your child has difficulties that aren’t helped by the standard strategies that are being enthusiastically embraced as “good practice”.

It’s really hard to get any real understanding of the impact of diagnosis because, as has been demonstrated on this thread, people simply don’t want to hear it might not be “the answer”. Really that’s because they are so heavily invested in the process and so overwhelmed by things that they need diagnosis to be the right thing to do. I think if I was being brutally honest it helps the parents more than the child. Sometimes that must have a knock on positive effect for the child.

As far as research goes and trying to pull out what has been shown to help in any particular presentation, I think there’s little of value, and even less post the merging of Asperger’s, autism and pdd(nos). It’s increasingly difficult to discuss even here, which is a shame because the wealth of knowledge and thoughtful parenting on MN used to be really amazing.

Or as an alternative view, getting a diagnosis makes no difference because practically there's no support afterwards anyway and school refuses to believe, claiming it was just bad parenting. This happens a lot.

"people simply don’t want to hear it might not be “the answer” "

I don't think it's the answer, but I feel strongly that it's a necessary stage of the journey.

"The main benefit of diagnosis really is no longer having to discuss diagnosis. You can move forward from is he, isn’t he, are the parents “in denial”, blah blah and so you regain a lot of useful collaboration time in meetings etc."

Completely agree with this.

"That is balanced by the negative of dealing with other people’s understanding of what autism looks like and what “helps” autistic people. That’s more problematic if your child has difficulties that aren’t helped by the standard strategies that are being enthusiastically embraced as “good practice”."

I suppose this depends on who you're dealing with and how open they are to understanding your individual child and their needs. I can imagine there are some people who have a limited approach but in my experience people have thankfully understood that all autistic people are different and have been open to understanding my individual child. I realise not everyone is this fortunate and it is an understandable fear that your child might be forced into a stereotypical / classic presentation of autism "box" - as opposed to forcing them into a neurotypical "box".

Great post @Plastictrees.

I have 2 diagnosed autistic children, im fairly certain my younger DD (9) is autistic too but haven’t pushed for diagnosis as although she has her ‘quirks’ it doesn’t affect her day to day life at all so i see no point in putting her through the diagnosis process/stress/worry for something she doesn’t need, if in the future she starts to struggle with her mental health/ education/ emotional wellbeing then i will push to get a diagnosis to get her the help she needs but otherwise she is a happy, sociable little girl who is doing well in school etc so i see no point xx

In my experience there are various factors.
Cultural, particularly if first generation migrant parents. The influence of culture and fear of wider family reactions is huge. I have one parent who is making her daughter refuse to use her access arrangements because of perceived stigma. I have explained several times that no one marking gcse will know nor does it appear on the certificate but there is a huge fear there.
One partner is pro a diagnosis and the other (usually male but not always) isn't. The same goes for the medication debate for ADHD.
Some parents just can't afford the private route.
Some parents or pupils or teachers all know that there is a diagnostic route but there is some barriers to diagnosing - usually the child not being in the right place to accept the 'thing' and that pathway can take years. However staff are aware so differentiate anyway. I have some ADHDers who clearly are but parents won't go down that route but the pupils are accommodated as if they have a diagnosis. Often the pupils really want the diagnosis but a parent just won't because of a range of experiences.
Now, I am getting pushback from parents saying they are cautious because of over diagnosis - particularly of ADHD and I get that.
Some conditions are ignored so DLD can present as dyslexia and or ADHD and be misdiagnosed. Also DLD is a horrible term and difficult for parents to get their head round because they have a child who talks.
There are a myriad of reasons why. Often it is frustrating, occasionally it is damaging. What needs to be considered, and it is my job as a SENCO, to walk people down that pathway and that can sometimes take years or you never get there but essentially the child's needs are front and central. It does help that there is greater acceptance now. At open days even ten years ago, parents would not want to be seen talking to the SENCO. I was like a leper amongst the shiny things. Now, I have an overwhelming stream of people and needs are far more complex than previously.

@Pippatpip Cultural, particularly if first generation migrant parents. The influence of culture and fear of wider family reactions is huge. I have one parent who is making her daughter refuse to use her access arrangements because of perceived stigma. I have explained several times that no one marking gcse will know nor does it appear on the certificate but there is a huge fear there.
I think possibly it isn’t a “perceived stigma” at school or with the qualifications they are wary of. The stigma may be very real and life shaping for some people. If their daughters “don’t do well at school” it’s one thing, if they “have something wrong with them” it’s quite another. It may impact their chances of marriage and their siblings chances too. Interestingly (and slightly off topic) a consultant (here in the uk) once explained to me that even as late as the 70s it was common to ascribe LD, epilepsy and other disabilities as caused by “a difficult birth” to avoid concerns about heritability and impact on marriage prospects of all siblings.

@Ohthatsabitshit I agree with you. The fear about how this will be received by wider family and thus gossip etc affecting life choices, marriage, getting into uni, is huge. I have noticed this decrease over the last ten years, thankfully but I once had to have a convo with a parent regarding their desire that neither the child or anyone else know about the ASC diagnosis if that was somehow linked to the parent refusal for the child not to be allowed to read Harry Potter because of witchcraft. For that parent, the practice of witchcraft was a real fear and close in terms of generational experience. I had to be sure that the child's differences were not going to be viewed as some form of 'possession'.
It's all very complex and fortunately here there is far more acceptance of ND unlike 26 years ago when going through this with my son. We were the social pariahs of the playground and he was only once invited to someone's house on a playdate. I think also that some mild ND symptoms are exacerbated by the rather toxic world we now live in and our school curriculum which is now far less inclusive than it used to be and parents are aware of this too. Sometimes, and I get this, some parents don't want to go for assessment because it might not be a 'thing' but just that their child is not bright, just cognitively low average or even below average. Again, this brings up its own can of worms.

When actually the main cognitive and learning issues come from inattention.

Could the inattention be caused by sensory issues distracting him?

So if you have negative feelings because you feel “different” , how does being told you are different (from the majority) help?

Can you understand how being told "your brain works differently from everyone else's" is a completely different message asserting a completely different judgement about a person's character compared to "well everyone else manages, you're just not trying hard enough"?

Once more for the people who didn't read the thread: THERE IS LIFE AFTER SCHOOL.

That diagnosis proves that the adult that child will grow into isn't just making it up when said adult requests reasonable adjustment at work and university.

Also, diagnosis in hand, you can escalate to the LEA or even take legal action if the school isn't meeting your child's needs.

@selffellatingouroborosofhate in what way do you think autistic people’s brains “work differently”?

Also, diagnosis in hand, you can escalate to the LEA or even take legal action if the school isn't meeting your child's needs.
You do NOT need a diagnosis for this.

One of the nhs letters we got while DS was on the waiting list literally highlighted that following the pathway to diagnosis may limit career options. Eg even the nhs tries to deter people from seeking a diagnosis.

I don’t think it’s about deterring people it’s about informing them of the possible repercussions.