ND assessment regrets

[Lotsofgin]

Hello,

We finally have ND assessment appointment after a two year wait.

I've been so focused on getting here I have never actually thought about what it means for my child.

Does anyone have any regrets about getting a formal diagnosis, what are the pros and cons that you have found.

I'm very worried about what it may mean as an adult, for example not being able to join the police / military ( not that they have ever expressed any interest in this) and declaring it to dvla.

I'm worried they will be angry with me when older for giving them a label.

I know we will get a diagnosis, but the school have already said that no one to one will be provided as it's not needed. There's already steps in place to help.
so I'm just wondering if it is worth it

Oof. We are just going through the ND assessment process now. Have you been getting advice and support from other places while you've been waiting that have helped you learn about DCs experience and needs to the point that you think a formal diagnosis and analysis can add anything valuable? Do you definitely need to declare the diagnosis in all those situations you described?

I'm in two minds as well about whether a diagnosis is going to help our situation: if we go down ECHP route then it definitely will. I also remind myself that it will help us to understand and communicate DDs needs to others we encounter on the path of life.

I kind of feel like it's nobody's business unless it's beneficial to DC to share the information...

Prior to diagnosis DC was assumed to be choosing to behave in suboptimal ways and received huge amounts of negative feedback, as well as having communications difficulties in relationships, which combined to crush their self- esteem and enjoyment of learning. On top of this, the assumption was that parenting was also suboptimal, and various strategies suggested that made things worse, as bottom line, DC did not have the same developmental capacity as their peers, so could not be incentivised or punished into meeting 'normal' expectations.

Now their neurodevelopmental differences are recognised, they are understood to be on their own trajectory. Adjustments are agreed and they are treated with great compassion and understanding. This makes DC feel safer and better understood. It remains hard, but we have a recognised conceptual framework from which to help people understand DC. And medication.

Perhaps flip the question round; we know that meeting diagnostic thresholds often means experiencing lifelong challenges given the poor fit between how ND people think, understand and communicate, and how NT society is organised. This impacts life chances and wellbeing and mental health. Is it better to experience these disadvantages, but imagine they are to do with some moral deficit in yourself as an individual, as you seem to struggle more than other people, or to understand that you share characteristics and experiences with other people, who face similar challenges and are fighting for better inclusion and support?

If as an adult, DC finds the diagnosis unhelpful, they don't need to share it with anyone.

Diagnosis is important for understanding yourself and others understanding you, I think.

There is not a blanket ban on joining the police or military with ASD, and you only have to declare it to the DVLA if you think it may affect your driving.

the school have already said that no one to one will be provided as it's not needed.

Support in school, including 1:1 (which is unlikely long term without an EHCP), is based on needs, not diagnosis. Just because the school say it isn’t needed doesn’t necessarily mean it isn’t actually needed.

As an adult with ASD I've found it helpful to understand myself and the struggles I have, but I also don't have to tell anyone unless I want to (admittedly never tried to join police or military). I have held a security clearance and had to declare it for that but could do that without anyone at work knowing - at the time understanding isn't what it is now and I didn't want to tell work.
How old is your child? My daughter is only 8 but was so relieved to get her diagnosis. It's worth noting she was just a bit quirky and headstrong through EYFS but fell apart as more formal learning started and the social and emotional gap between her and her peers increased.

I had my child assessed/diagnosed at the age of 9 and I have zero regrets. It has not led to any additional support/adjustments in school or otherwise but it has made a big difference to how my son views himself and his place in the world. That on its own was worth the effort (and money, as we had to go down the private route).

Advantages:
-Improvement in DS’s self-esteem.
-It has made a difference to my confidence in handling DS and acceptance that we need to do things differently to other families.
-DP has accepted the situation a little better (he was not really on board with diagnosis)
-It has given better leverage with school and although he doesn’t have any extra help, I think it is beneficial for his teachers to know.
-DS has found autistic role models.
-A diagnosis gives potential coverage under the disability discrimination act, which makes it easier to request reasonable adjustments if required.

Disadvantages:
-I was unexpectedly sad/upset for a while following the diagnosis.
-I find filling in those activity consent forms hard. There’s a box for medical conditions/disabilities and I don’t know what to put as DS would prefer not to share his diagnosis.
-The one about not joining the army is an advantage in my book. DS would be very poorly suited to the forces IMO. I do not think it would prevent you from joining the police.

DS is smart, very verbal and excellent at masking so he does not ‘look autistic’ on a good day. It was because of this that I felt he needed a diagnosis. DS already new that he was different from the other children, he just didn’t know why. Social situations with similar aged peers are so hard for him, but fortunately he seems to be coping better with secondary school that primary.

knew

I'm glad we did it. It's really helped me and DH as parents. We were trying really hard, not sure what was wrong, arguing all the time and were thoroughly miserable as a family. It's meant that DD's biggest bugbear at school, homework, has been significantly adjusted and she gets 1-1 with the SENCO (although we pay extra for this - private school). It's given us the confidence to do some things differently, for instance regarding education.

A side benefit was DH understanding himself better.

But OMG the paperwork. I feel like I have two part time professional jobs, not just one.

My husband is a police officer in the MET and he has colleagues who have a diagnosis of, and have shared that they are ADHD/ASD. I think in the future society will continue to become more inclusive so I don’t think ND people will have issues joining different institutions.

I've been pondering the same, I'm pretty sure DD is Audhd.

My main concerns are regarding ASC/D diagnosis for the reasons you mentioned above & in addition:

A higher likelihood of being detained under the mental health act,

Her parenting being criticised due to diagnosis,

Travel restrictions,

That there's no further support post diagnosis as CAHMS deem autistic behaviours just that.

Whereas ADHD diagnosis brings the option of medication, DBT & CBT.

I work for the police and they are becoming increasingly welcoming of ND recruits and providing reasonable adjustments where required. They're supposed to be representative of society so employing ND people is a necessity IMO.

My son (7) is recently diagnosed and I questioned getting the diagnosis myself. He copes very well at school and in life in general although struggles with social and communication skills but doesn't need any interventions. However, I'm very aware that this could change as his world/life changes e.g starting secondary school, suffering bereavement/other stresses etc and he may require adjustments going forward so I decided it would be best to have the diagnosis in place in case it's needed in the future.

My last workplace was really welcoming to ND staff and keen to increase representation in the workforce and tap in to the unique skills and ways of looking at things that ND people can bring. Doesn't mean we got it right all the time, but we put genuine effort into making recruitment and retention policies more ND-friendly. I think for an ND child growing up today the idea of being "labelled" in a negative way will be less of an issue, at least in some sectors and industries. Plus the rate of diagnoses is growing so there will be more officially recognised ND people in the population in the future!

I'm not ND myself (as far as I'm aware) but knowing my DS is gives me a much better idea of what I need to learn to inform how I parent him. The diagnosis itself doesn't do that, but embracing the fact that he is ND means that I know I need to learn how to do things differently for his benefit (and for mine!)

Interestingly, oddly, and also frustratingly, my in-laws are really struggling to engage with the concept that DD is autistic without a diagnosis. The autism is really affecting our lives at the moment - she and I just spent 2 weeks living separately from DH and DS cos of the meltdowns and violence, and she hasn't been in school for months. Anxiety is sky high. School has accepted that she's autistic, Family Services have accepted it, GP is acting on it. But for some reason, DH says his folks can't get their heads around it unless a psychiatrist confirms it. Super frustrating for me, but the screening report is due in a few weeks and I am ready to sit down with them and talk them through it all.

That is so frustrating for you. We are in a position where in-laws refuse to believe that our son has autism despite having a diagnosis. They think that because it's a private diagnosis we have paid to be told what we want to hear. We no longer discuss this with them and they are under strict instruction not to share their views with our son but its so sad that they can't accept him for who he is. Almost like they feel that if he's autistic he's defective in some way and refuse to accept it.

@WhyDoesItAlways yikes, that sounds tough and very frustrating

Thank you everyone for the replies.
I went ahead with the assessment, but am still in two minds as to whether i should phone and cancel the panel meeting and say i don't want the diagnosis.

I know shes autistic, school know shes autistic. We are in Wales so their version of the echp, is an idp and shes getting one of them without a diagnosis.

I wasn't aware of the travel restrictions, or that CHAMS dont offer support if needed with a diagnosis.
This has put me off further as a few family members including my brother have/ do lived and worked in Australia.

There's also part of me that wonders if it is selective mutism and anxiety, which has been mentioned a few times.
Most of her difficulties are around speaking to people that aren't myself or very close to her.
There doesn't seem to be any help for that either though.

Hi OP, I think you are just panicking a bit in the face of the unknown. I haven't tried accessing CAMHS but they are reputedly pretty overwhelmed and useless whoever you are...and I'm not sure it makes sense to base decisions on what people in Australia may or may not think if you don't live there.

Do you have some support for yourself? Someone to talk to about your worries?

This is a good charity to find support with the mutism:

www.selectivemutism.org.uk/

@Phineyj I probably am, i aslo have horrible anxiety.

My main fear is her hating me when shes older, for hindering her in some way. This is why im yet to apply for dla, incase she ever reads the forms when shes older.
She is very aware, smart and capable in many ways. People assume shes stupid or doesn't understand because she doesn't speak but thats not the case at all.

I am aware the diagnosis may help while shes in school, its when shes an adult im worried how it my hold her back.

I wish i knew what to do for the best.

Ill have a look at that thank you.

As an adult DD is more likely to be annoyed with you if you stop the diagnosis, IMO.

Both anxiety and SM can be co-morbidities, so they can both be in addition to autism.

An unlawful blanket policy from CAMHS of refusing to support DC with ASD can be challenged. And, if they didn’t use the excuse of refusing because of an ASD diagnosis, they would use the excuse of something else.

^There's also part of me that wonders if it is selective mutism and anxiety, which has been mentioned a few times.
Most of her difficulties are around speaking to people that aren't myself or very close to her.^

Your dc sounds similar to mine. It can be so worrying. Have you decided to go ahead with the diagnosis?