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?

no one around you has an issue with your zebraness

This does not exist. As soon as you interact with non-family, people have an issue with your zebraness.

You absolutely have to collect medical evidence, including diagnosis at the earliest opportunity. There are backlogs and delays. Don't add to delay.

If DS2 had not been diagnosed his access to support (illegal as access is supposed to be need led) would have been delayed and he would not have had an EHCP whilst still at primary. As well as ASD and ADHD he had speech delay and was written off as biddable but stupid. Primary called in EP expecting low IQ but it turned out he was 99.8 level.

Without an EHCP, He would not have had priority access to secondary schools.

When secondary failed he, without an EHCP, would not have had access to internet school and tutors funded by the LA. He would not have achieved 11 GCSEs with good enough grades to progress.

Without an EHCP he would not have been entitled to support and extra time at 6th form college and achieve A*, A A in maths, further maths and physics.

Without his EHCP, medical history and previously supplied support he would not be entitled to DSA and extra time at uni.

Support at school is crap. But it gets better if you can navigate that. You need medical evidence to do that. Don't let schools convince you it is of no value.

Transition to school or age/great school demands may make it clearer.

Till then I'd adapt to the child you have - one of mine needed one step instructions and to say it back - needed count downs to changes in activities - and needed a lot of outside time and struggled with sleep so tried many things to help - and lots of repetition and scaffolding - breaking down task - to manage and to learn - standard advice like reward charts didn't work - another child struggled massive with textures and noise we helped as much as we could.

@selffellatingouroborosofhate this is so true. I felt sick to my stomach trying to understand what was happening and why others were having issues with my son. It was the feeling I got from other parents. I'm sensitive to other people and it was horrible what I could feel. I needed to understand it. Because I'm a single parent I just didn't fully realise outside of our bubble.

I'm not sure that those labels only apply to people with autism or ADHD though and are you suggesting that people with a diagnosis should exempt themselves from trying not to appear to be rude/thoughtless etc but everyone else should address how they behave if they are deemed to be rude/thoughtless?
When people perceive me to be rude or dismissive and it gets fed back to me (because I won't have noticed otherwise) I will feel bad that I have upset that person if I care about them or I won't care if i dont care about them. For the people I care about I will apologise and either explain that things don't always come out as I would like and try and remember what I was doing/saying that they didn't like and try and remember to change how I do it/say it next time. I'm not sure that process would be any different with or without a diagnosis or make me feel any different.

Seeing the difference it has made to my teen daughter's self esteem has 100% made her diagnosis worth it. After a really hard first year at secondary school when we realised our quirky, bright girl might be having a different experience to her peers, and encouraged by a fantastic year head at school, we went for private assessment.

After a period of adjustment while she got used to the idea of being autistic, she is thriving. She is able to be her true self - she chooses to mask sometimes, but she then makes sure she takes time after to settle herself and recover.

After being terrified that we were going to lose her forever, we have a lovely, curious, quirky, empathetic, kind young woman who can advocate for herself and build a future that plays to her strengths. I was so scared of what it would mean if she was labelled as autistic - but that fact it that she IS autistic - diagnosis or not. But the diagnosis means she understands herself better and can accept herself.

@emilybrontosaurus I didn't see your child's age. Things will very likely change. Once the demands of more challenging social interaction comes into play, things change. You may really wish you had pursued sooner.

Not one single person said to me i should look into it until the end of primary. Even then it was just ' hints '. People are afraid to say what they see because parents get upset, defensive and may react very badly to a teacher suggesting it.

Yup

No one would refuse an assessment for asthma for their child on the basis of a possible future wish to emigrate.

You've completely missed my point.

Loads of people can't do X Y or Z because of a disability. Loads of people. Yet, for neurodivergent conditions alone, ducking a diagnosis because of a future wish to do X Y or Z is somehow deemed OK.

Do you remember the Lufthansa pilot who flew his aircraft, with hundreds of passengers, into a mountain to commit suicide? Would you accept pilots ducking a depression diagnosis because it would stop them from flying?

Where there is a genuine occupational requirement to be free of a particular medical condition to do a job, ducking the diagnosis puts lives at risk. We don't get to do everything we want to do in life. Denying your children a diagnostic assessment because of possible future restrictions on their jobs or ability to emigrate is selfish and risks others, as well as denying your child the support they will need to live with that condition.

Because some people like certainty. I do.
I feel more confident advocating for my child precisely because a professional has diagnosed him as autistic, and crucially, they take me much more seriously than they did before his diagnosis, when all I could say was that I thought he was autistic.

I am so sorry. I hope you have been able to live a happier life as an adult.

Yeah, but basically saying ‘it is what it is’ doesn’t really help my family really. Or all the others. Especially when you criticise me for trying to access the only ‘help’ available (I appreciate you may have being trying to advise and help but it did come across as a bit critical).

We have no choice but to continue to engage with CAMHS as they prescribe DC’s medication.

Not many people know about this option, unfortunately, but there is 'Right to Choose' which is NHS-funded assessment and it is usually quicker than the standard route. It's how my child was assessed and diagnosed. Took less than 6 months from referral to diagnosis.

Also, I don't see the harm in getting your son added to the waiting list now - a lot can change in 2 years so by the time he gets to the top of the list, you/he might feel that it's worth doing. What's the harm in getting him on the list? You/he can always withdraw later if you choose.

I forgot to mention DLA and PIP. I used DS2's DLA to pay for private Salt, OT and EP reports that were instrumental in getting him support. The transfer from DLA to PIP is difficult as criteria change but is helped by previously submitted medical evidence.

We get called those labels no matter how hard we try. Not making eye contact, not smiling, not understanding the rules even when someone tries to explain them. Getting confused by contradictory rules.

My stock example of contradictory rules is how our parents tell us to tell the truth, but then when someone asks me if I like their dress/haircut/etc and I truthfully say that I don't, I'm now in the wrong. In that circumstance, I am deemed rude for hurting the other person's feelings by being truthful as I was taught to be, but no one considers her decision to fish for compliments to be rude and no one considers my view that fishing for compliments and coercing people into lying is appalling behaviour.

Other autistic people have described the differences between autistic and non-autistic people as akin to a cultural difference. If it was treated as a cultural difference, people would know that autistic people are likely to resent being coerced into lying and would know not to fish for compliments with us.

I think the harm could be in a few ways.

My main concern is that something like autism or ADHD has a number of traits and while combined with a lot of them in isolation some of them are just, well, people. DH for example hyper fixates but I genuinely don’t believe he has autism (with the usual disclaimers no one really knows) - he just has this trait. So I do think it is possible once someone has said ‘autism is a possibility’ to have a sort of ‘seek and ye shall find’ thing.

It isn’t like standing in a queue to get an ice cream and changing your mind and then letting someone else in your spot. It’s a big deal.

A lot of children I know have 'half' a diagnosis i.e. they're AuDHD but only have the 'Au' bit diagnosed. Their lives could be transformed if they were medicated for ADHD. I guess the problem is waiting lists.

Parents who don't at least try the meds treatment for ADHD are very baffling. You'd treat your child for diabetes, right?

The waiting lists are longer for adults, over three years for me, and in many areas there is no NHS adult assessment for autism full-stop. Delaying now may slam the door shut for him forever. When I looked at private assessment for myself, the waiting lists for private assessment at Lorna Wing were closed. It's not a given that private assessment will be available for adults.

With two year waiting lists for children, you can't afford to wait until things get difficult for him to get him on the list.

The problem is there is no diagnostic test for ADHD in the same way there is for diabetes. It doesn’t show up on blood tests, for example. The diagnostic process for ADHD is based on observable behaviours, but there is a lot of diagnostic overshadowing with trauma and types of anxiety as it is essentially poor executive functioning and impaired fight or flight response, leading to dysregulation. I conduct ADHD assessments but I understand why parents are cautious about medication.

There are many alternative options besides medicating your child.

@Plastictrees

Anxiety is an ADHD symptom, though, the dopamine issues literally cause it (and trigger the HPA cortisol response, if I'm not mistaken). We could measure cortisol? I'm convinced it's raised significantly in ADHD people.

When I was a stressed and anxious child, I would have loved to have taken a pill to stop the terror.

I think you're still in the denial phase.
You seem to have bought into the (very damaging) narrative that autism/ADHD diagnoses are given out on demand. They are not. There are strict diagnostic criteria. Some people don't get diagnosed. (My child was assessed for both and diagnosed with autism but not ADHD.) Someone who just has "traits" but does not meet all the diagnostic criteria will not be diagnosed.

I had my lightbulb moment when DS was 4, just before he started school. I did doubt myself for a long time, largely because of all the gaslighting, but also because I'm not a professional and I didn't know much about autism at the time, but from then on I educated myself as best I could. The more I learned, and the more I observed DS with that knowledge as he grew older and struggled with various things, the more sure I became. DH didn't want to believe it, though, and only accepted it at last when we had the actual diagnosis. He was upset about it, but at least he was honest about his feelings, rather than hiding behind excuses like "I don't want to label him" or "a diagnosis won't change anything". Actually a diagnosis has helped us a lot.

Severely curtailed a young adults plans to join the Armed Forces (occupation dependent), for instance.

as the child of a parent who didn’t seek a diagnosis for me - it made my teenage/adult life absolute hell. took me 2.5 years to get a diagnosis and that was only once i had worked out myself that i had an issue

I’m unsure what dopamine issues you mean. I’m skeptical of dopamine hypothesis in general, as many have been proven to be incorrect such as in depression. Cortisol can be raised for many reasons so I don’t think that could be used as a marker of ADHD.

I’m sure, or other strategies to manage anxiety? I would be very cautious of children taking medication for anxiety without trying alternatives first, in terms of fostering a long term dependency.