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?

In some cases they take the idea home and discuss it with family and it gets pooh-poohed because "they are just like you/I/your sister was at that age - perfectly normal". Because everyone in the family is ND and they have no idea what an NT child would actually look like...

No, it's not sarcastic. Autism is at least partly genetic, so comparing your second child to your first might not be helpful because if one is autistic, the other is more likely to be.

1. If you aren't in a union, join one.
2. You can opt not to disclose the diagnosis even though you have it. Don't blame being diagnosed for how people react when you disclose it, that's because of them being jerks.
3. You were being discriminated against anyway but it looked like people calling you "weird" and "rude" and telling you to smile more and make more eye contact and saying things like "god why do you have to be so clumsy and keep dropping things all the time?" and "just wear the (stinky horrid-feeling) makeup and (itchy) tights and (painful diggy) bra, everyone else does". People treating you unfairly because of the effects of your undiagnosed disability is still a form of discrimination.
4. Join. A. Union.

I've also worked in HE, can confirm. Likewise, employers will often want diagnoses to make adjustments. Hell, some concert venues (O2 venues, for starters) want you to prove that you are disabled to get adjustments. And guess what, a doctor's letter with a statement of needs and your diagnosis is one of the evidence items they will accept.

Autistic children grow into autistic adults. Autism isn't a condition that a person can outgrow.

Please please please think of the support needed by the adult your child will grow into and the waiting lists and hoops they will have to jump through to get it. The biggest help you can give the adult they will become is to get them through that first set of hoops, the diagnostic process, before they leave home.

Meanwhile, in the real world, kids with ADHD are told 20,000 more negative messages than their peers by age 10. That's over five more negative messages per day, and no matter how the child tries, they can't "get it right" and make the adults stop giving the negative messages.

The neurotypical world hates neurodivergent people. The diagnosis gives us a defence against the daily onslaught of hate, a defence against internalising the negativity, a defence against taking the blame for something we were born with.

No, we can't just "love and accept ourselves and others for who and what they are" because the neurotypical world won't accept us for who and what we are and will hammer that into innocent children's heads five times per day every day.

"they are just like you/I/your sister was at that age - perfectly normal"

This was literally what my dad was like when I was filling out my forms.

A diagnosis does change self perception and unless you've seen the massive difference it makes in your child once theyve been diagnosed and start to understand themselves, then you just dont know what your talking about.
It is awful that people need a diagnosis to be able to start to love themselves but if your ND and raised in an NT world I can see why so many ND people struggle to accept themselves
@1billionthtimeivenamwchanged this simply isn’t the case for everyone. You are taking your own experience and assuming it’s the same for everyone. I DO “know what I am talking about” and absolutely do not draw the same conclusion from the experience.

It’s lovely that for you diagnosis has lead to an acceptance of who you are but the idea that it’s necessary for everyone is ludicrous.

I didnt state that it was the case for everyone, I was replying mostly to this part Maybe love and accept ourselves and others for who and what they are are a better approach than this very rigid sort of thinking where a diagnosis changes self perception

If that isnt the case for you then you havnt had the same experience? If you've felt able to accept yourself from whatever age, that's absolutely fantastic for you.

If people havnt felt the need to get a diagnosis or felt a diagnosis has changed how theyve felt about themselves that is great for them, but that isnt the same experience as finally feeling relieved at knowing what's "wrong" with you and finally learning how to accept yourself. It's not the same experience at all

@1billionthtimeivenamwchanged I’m not sure what point you are trying to make?

A diagnosis does change self perception and unless you've seen the massive difference it makes in your child once theyve been diagnosed and start to understand themselves, then you just dont know what your talking about.
Seems at odds with
I didnt state that it was the case for everyone

My point was to the poster had said *very rigid sort of thinking where a diagnosis changes self perception *

I'm not quite sure what point your trying to make aside from being argumentative to be honest? I'll say it again in not so many words, a diagnosis does change self perception when a child starts to understand themselves because of their diagnosis

I disagree with your blanket statements about the impact of diagnosis. I’m not sure why that’s “argumentative”. Many many people do not find it changes their perception of themselves or leads to the benefits you describe. Suggesting this is universal or even likely result of dx isn’t true.

You may as well say that studying ancestry and having genetic testing has shown I’m British. This had lead me to an acceptance of who I am and why I like baked beans and queuing rules. It’s really important for everyone to know their heritage. It patently isn’t though because lots of people will tell you they don’t feel the same way and the process wouldn’t or hadn’t been particularly helpful to them.

DS is likely autistic like his Dad but no one will refer us since he's thriving in school and it's possible to parent him with just a few changes. Which I feel is kind of fair enough since the traits he has are not yet presenting serious difficulties for him. At the same time it may go pear shaped upon entering secondary so we've chosen a local school with good SEN provision that is quite laid back.

I said in my first post All well and good saying that but the reality is, that it mostly doesnt happen. Children can be cruel to one another and they somtimes dont accept children who are different.
We can say that we should just accept everyone for who they are and I 100% agree, but that's not what happens. We all knew a weird kid growing up who people didnt want to be friends with.
A diagnosis does change self perception and unless you've seen the massive difference it makes in your child once theyve been diagnosed and start to understand themselves, then you just dont know what your talking about.
It is awful that people need a diagnosis to be able to start to love themselves but if your ND and raised in an NT world I can see why so many ND people struggle to accept themselves

What are you talking about? Where did I say at any point that it was everyone and universal?
What did I say that was a blanket statement about diagnosis?

I dont know why you've decided to take umbridge at my opinion about the matter. Very odd out of all the posts here mine are the ones you've decided to try and pick at when I've not been offensive 🤦‍♀️🤣

I've mostly seen if for a few reasons. 1. They think it's undesirable and are embarrassed by the 'label' 2. They would then have to admit their own ND and don't want to due to reason 1 3. They see their child's behaviour as perfectly normal due to their own ND.

*Ohthatsabitshit *

A diagnosis does change self perception and unless you've seen the massive difference it makes in your child once theyve been diagnosed and start to understand themselves, then you just dont know what your talking about.

This is the point you seem to be focused on. If it hasnt made a massive difference to you or your child, then you dont know what your talking about because you dont have the positive effects of it. Which is a bit shit for you and Its sad it's been that way for you.

It's not been that way for me, DD or several of my friends children who have been diagnosed. Everyone I know who has been diagnosed with ND has seen a massive positive impact to their lives. It's very sad for you that you havnt

Yes. I obviously can’t give details but the parents made the staff’s lives miserable because they were in such denial. The poor child moved school and ended up excluded from two further schools before they moved out of area.

The whole family needed support really but because of the way the parents behaved it was very hard to help them. They were in denial and very litigious.

It’s really sad.

So how do you know what support is needed without the label? The support for someone doing something due to having been abused is different to the support you give someone who does something because they're autistic although the resulting behaviour may look the same.

Would you say the same for a cough? Don't want to label someone so should we treat everyone who has a cough with chemotherapy as not to stigmatise those with cancer?

Labels are important and the fact that many think an ND diagnosis is stigmatising tells me that section of society is the problem, not the 'label'.

I completely agree with this.

If you think families who have unmet SEN needs have time to sort out the system crack on.

Education Support for children to access their respective national curriculum is the fourth emergency service if we don't get it to children now they don't get their full potential back.

In every case of our family not having a diagnosis it puts barriers to support in place. You have to work within the system for the benefit of the children.

By all means sort the system but children today don't have 5,10 or more realistically more years to wait for a system and social change. They need help now.

Support (particularly in education) ISN’T based on diagnosis. It is very clearly NEEDS based and that’s for very clear reasons. Children with all diagnosis have a range of needs and one solution really doesn’t fit all. This is really clear in some broad diagnosis like “ASD” where we see children who need 2:1 care and are completely dependent and children who excel academically and in sports, drama, debate etc.

@1billionthtimeivenamwchanged i was responding to your rather robust posts addressed to me. I’m very happy to agree to disagree. There is really no need to feel “sad” that something that helped your family wasn’t helpful to mine. The two situations are not connected. It would be equally unnecessary for me to feel “sad” that your loved ones needed a diagnosis to feel ok. Those sort of comments are really not kind or accepting of a range of approaches being workable. They seek to put the diagnosed and undiagnosed autistic against each other. Really we are all just trying to do what’s best for our children (and selves) and it’s a good thing to share all experiences.

Multiple families across my extended family have the completely opposite experience with access to support you are describing. And this is the key issue it is not equal nor is it universal, it is a horrid lottery!

No diagnosis no support that's on the ground across Ireland and UK for a significant number of my family members. That's to access the support.The second layer is when needs are considered.

You are right it should be needs first but no budget, not enough trained SNA or SEN teachers mean that's a pipe dream for most.

Schools here have x hours they will be pressured to support those who have diagnoses and state support plans and depending on jurisdiction will have state commitment to provide support.

This means the reality is children with SEN are competing for their support and they are doing that with a huge countdown clock to the timeline that gives them the chance to reach their full potential.

It is really important to acknowledge that this is what a lot of parents are facing and being told it is always need basis everywhere is quite frankly a lie.

I think the issue is that having a diagnosis means different things in different areas of life- it's the kind of thing that could work well in one employment situation set up for ND and able to offer additional support, but would be very difficult in another where they see- extra needs, time and energy and are not supportive of that. There are higher rates of unemployment in ND groups, partly due to the issues themselves but IMO mostly because employers, in a world of being able to choose people and dismiss them in the first 2 years without penalty, are looking for the 'easy' employees, same for ageism, sexism, very hard to prove but we know it goes on.

Similarly, in school you can go without diagnosis, but at HE level, you will find it much easier with a diagnosis to get accommodations and universities are usually set up for these reasonably well these days. It is then a shock for our graduates to go into workplaces that are not set up for this or that struggle to accommodate them at all.

Yes. I had extreme opposition from child's other parent when I kept raising questions regards ND suspicion. I just couldn't understand why. We are not together. I pushed ahead with private assessment anyway ( NHS declined request).

It has gradually become blindingly obvious to me that ex partner and family are predominantly all ND. I just didn't realise. Now alot makes sense.

I agree but it’s equally important to recognise that it isn’t a universal truth. If the main driver for pursuing a medical diagnosis is to access support we need to be sure that’s actually necessary and what is delivering that support. If the main driver for pursuing diagnosis is acceptance and self esteem then we need to be sure it is delivering that.
While I really appreciate that many people see these effects the cause and effect isn’t clear cut or experienced by all.
And while I agree it must be frustrating for you to hear “support is needs based” on repeat I hope you would recognise that diagnosis is necessary to get support and for happiness is fairly irritating and inaccurate in some cases too.

The very reality is that without a diagnosis, I believe strongly that the cause of the 'problems/needs' in school will be put onto the parents as a parenting failure, a discipline problem or a trauma response. Needs will be seen as problems and negative behaviours and nothing more.

When you have a diagnosis you can say, thankyou kindly but can you just let me know how you are supporting the needs of this child who is Autistic/ADHD etc.