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?

A lot are worried they'll get eye rolls for jumping on the bandwagon" that's why I've not bothered to get my own diagnosis as I'm 99% I have it but know so many think it's bullshit and an excuse for sloppy behaviour so I've kept it to myself

I think it’s a pointless exercise. The only positive about diagnosis is that you can stop having endless conversations about what might be wrong.

@whatcanthematterbe81 these people are just idiots. I see this mentality alot on here, on MN threads. I cannot understand why people get so upset at the suggestion someones child is ND ( it's usually a very familiar feeling or post the OP may be writing ). Yet, the people who will come to say that not everyone is ND or it's just laziness. Maybe, but what's the problem in exploring it?

I can't yet understand the psychology behind this. Maybe because people feel better suggesting other people are just useless and inept so they can't possibly be themselves.

@Tittat50 you're right. And also I guess if they've never had that feeling where you know it's just not normal, then they'll never be able to understand. They should try tho

I met my friends teen DS recently and instantly thought 'oh he's autistic' (long distance old friend hence had not met her kids before). Some time later we were speaking about some struggles that her DH had and I tentatively suggested that her DH and DS might both be autistic and she said 'oh yeh obviously we know that'.

She explained that neither are formally diagnosed but they know and they just adjust their lives accordingly. Because DH had never had a formal diagnosis and lived his life fine without they never sought one for their DS and he also has not needed one so far. They offered him to make the choice for himself when he was older and he hasn't wanted to. He's just seen as a quirky kid and the food preferences, textures, noise sensitivity, routines, special interests they just cater for. It seems he's quite likely to have a successful career in IT much like his dad.

They see it as almost quite a political point: why does a person need a medical diagnosis for something that is a valid different way of being? That needing to be diagnosed like you would with an illness is imposing an illness model.

I'm not saying this is right for everyone but it works for them and I found it refreshing, respectful and the furthest thing from abusive or neglectful.

As a parent I know that my child's development isn't in line with his peers. I suspect DCD and ADHD. We have been trying to get a diagnosis for over 7 years. We can't afford to go private.
Currently in the process of applying for EHCP. Paediatrics are refusing to diagnose , as child doesn't have ticks in all boxes.
We continue to fight.

I would say it's only neglectful if the child is suffering at home or school due to lack of an official diagnosis.
Maybe the parents are scared of what a medical diagnosis could mean for the child's education?
Maybe the parents are worried an official diagnosis could impact social interactions .ie. Isolation from peers or bullying.
Maybe they're scared that their child will be pumped full of drugs that have harmful side effcts in later life.
If the child is ND and depending what scale he/she lands upon, an official diagnosis may only be a piece of paper- so no need for any other action . Some parents just want to bypass that process and raise their child without labels.

I have a DD who's thought she is autistic since she was 14. She's 20 now. I have also thought she is autistic for some time. She doesn't want a diagnosis and never has. It wouldn't make a difference to her because she still has to function in the world and she feels a label would make no difference to that. She knows what and who she is.

I wouldn't be judging other parents for making choices which may be informed by factors I know nothing about. Keep your own side of the street clean.

I can see this from the other side. We have a strong willed dd7 whose previous teachers have struggled with. The school wants to get an EHCP so they can get extra funding. She’s fine at home. They embellished the EHCP application to make things sound worse than they were to get the application approved, it was refused. An education psychologist has said she’s not ND. School have insisted on a ND assessment which we are on the (long) waiting list for. I’m convinced the school just want it to get extra funding as she’s actually doing ok right now! No classic autism signs just strong willed nature and focus issues in the past but she’s getting better with that now.

The reality is the system isn't fit for purpose. And whilst your experience of that young man is positive many hit puberty and all hell breaks loose

Then unfortunately the parents are dealing with teen challenges on top of what could be challenging behaviour..and now to be the perfect storm it's in exam years.

I completely agree in an ideal children would get support without a piece of paper the reality is very different.

Also the variance of development is so broad we really can't predict the future teen from the young child

This is my son. He’s 6 and has had many physical health problems. I’ve had to fight the health service for the most basic of things e.g hearing aids, speech therapy etc. I’m so worn out by taking him to all his appointments and his school is on my back about his poor attendance as he has had time off for surgery. I know he probably has ASD/ADHD but I don’t know I have any fight left in me. He’s currently under 3 specialists. I know I’m a bad mum but no one backs me up or helps, I’m just exhausted.

It depends on the circumstances and what the goal is. What would be the purpose of diagnosis? Autism isnt an illness or disease There are different views on autism. Many believe it is just the variance in the makeup of the brain. Just like skin patterns are different. As to how disabling it is depends on the extent and impact on daily living. We are all on the autistic spectrum apparently just to varying degrees. Children can change as they grow up and adapt. Plus the referral process takes literally years and years due to lack of resources. So I struggle to see the point. But it would depend on the impact it has and how well the child copes.

You don’t sound like a bad mum to me; the opposite.

Please take a look into sensory processing disorders (SPD)s - there are lots of different types. Some really good videos on you tube to explain the different types. At age 4 its probably not worth the frustration of trying. My son showed signs from even a baby. I sought support from GP around the age of 5 and was advised not to label him and that he was too young for a referal as brain and personality still developing. Primary school were unsuportive and did not believe there were any SEN needs and also refused a referral as he was educationally doing ok - instead they labelled him as naughty. Age 7 I found out about sensory processing disorders and had a positive assessment. This helped in understanding what triggered him and why he responded as he did. He is now a teen and now school have done a referral but I am unsure on the point of it as we both have our own strategies in place to help him and he copes fine and is doing well educationally. He avoids environments he doesnt like. Its worth doing some finding out about things yourself and just help him cope and do your own strategies. As he gets older he can tell you more about how things are for him and you can better support him. As he gets older if he struggles to cope in school or at home or socially then its worth pursuing a referral but if you are all coping there is probably little point. Also to flag up that there are literally years long waiting lists for assessments via the school / GP. In the end I will probably get a private one. But my advice from my experience at this age is to wait a few more years until he is a little older.

You are not a bad mum at all. You are a mum supporting your child. Ignore the school. Its just their job to hassle re attendance as the local authority hassle them re attendance and have attendance goals they have to meet. Their attendance stats are not your primary concern - your child is. Hats off to you ! I salute you :)

We're not all Autistic. Talk about minimising our difficulties

Me and DD are formally diagnosed. My friend and her son are not.

I think if people can get by without being diagnosed it's because theyve learnt it's fine to be the way they are, having supportive parents makes a massive difference. My friend was accepted for being quirky as a child and has accepted her DS. He still has his struggles but because he gets the right sort of support he is doing better than some

I learnt growing up to be ashamed of who I was. That there was somthing wrong with me and I had to hide it. When family commented how similar DD was to me, it was said in a negative way . I spent too long of my life trying g to be like everyone else, I didnt realise I had the option to live a life I found easier. I thought I had to live like everyone else lived their life.

I'm hoping by the time my DD has children she will be like my friend and her son and will know how to meet all her own needs and there for her childrens.

I didnt know how to meet my needs, so in hindsight neglected some of my DD's needs because I didnt know how to help, because I just ignored that part of me. I think for some of us, a diagnosis helps get rid of that awful voice inside that tells us there is somthing wrong with us, we are failures ect

Having had an autism diagnosis in my 30’s, I have personal experience of living with/without a diagnosis. Life is so much easier now, as I understand why I feel what I feel and put measures in place to help myself. I didn’t want my daughter to suffer as I did, so she was screened (& diagnosed) in junior school. To any parent who is concerned about their child being labelled, don’t be; getting the appropriate measures and support in place will open doors to a much better future.

That's us. I was diagnosed with ASD in July( I'm in my 30's ) and my DD was diagnosed this week, I dont ever want her to grow up like I did, not understanding herself and blaming herself for that

My youngest is very ND and needed the diagnosis to even survive in education. It cost thousands of pounds but was worth every penny as my youngest extremely bright child is now thriving. His older brother got through to A levels before we had him assessed. Our focus of the assessment was to look for dyslexia but we ended up with the same profile as for our youngest child the only difference big brother had better coping skills and had survived grammar school!! He is now studying for a masters degree!
As a teacher i have met parents that are completely unaware of their child being ND and I have met parents ( in a private school) that may have an assessment done but then refuse for it to be on their child's records. These are the same parents that often have also refused to have their child's mental health challenges get on their child's records!! The children often have the mental health issues due to their undiagnosed ND!!
Personally I would go for a general screening assessment and see what happens. Depending on age and real life challenges then decide how much further to go with the assessments. As I said I have 2 kids same needs but different outward challenges!! No one ND KID IS THE SAME

I wish more people realised this. It's so important.

@Bornnotbourne you are a wonderful mum. Obviously prioritising the more immediate challenges as only you can.

Is there any family help as I know we helped my aunt over 20 years ago but we were a little scared of making her feel we didn't believe she could do it. The reality it took 15 nieces and nephews helping over the past twenty years to get things sorted.

I don't think the system is actually acceptable because it isn't possible for any parent to navigate while doing full time with a child who has needs that are evolving.

Not getting a diagnosis is sometimes absolutely nothing to do with a parent being in denial. I have chosen not to diagnose my child. She’s just a person - a wonderful unique human being. She has ADHD. I know this and I will support her as she needs to be supported - she wouldn’t get funding from my council anyway because she functions well at school. And a blanket diagnosis isn’t going to tell me the detail of how she needs support or indeed fund any of it. I want her to see it as part of her personality (which it is) and I will hep her up understand her brain just as every parent helps their child to understand what makes them tick.

@Bornnotbourne you are not a bad mum one single bit! You raise a fantastic point. That the stress of this can actually be too much. I'm incredibly unwell, lots of autoimmune problems. Right now, I'd struggle to fight for things like I did a few years ago. I was also fortunate to have people who helped pay for private assessment.

@MrsTulip I think many people have no idea how it is for us and ND kids. When I've explained people think oh but you can get 1 to 1 support in school, or, but you just ask for an ASD assessment. No, you have no clue. And our struggles will impact their children soon as they deal with the fallout of SEN kids in mainstream struggling with no help.

The system is set up to make you give up.

Except a diagnosis does bring support as they'll be more funding in place. This could like 1:1 teaching assistant in a mainstream school or having the funding to buy sensory resources or similar