Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

[ChocolateSpreadOnToast]

@Moonshine5

We live in a free country, as parents we decide. Why should people be forced to be labelled either way? And I say this with no vested interest. No judgement, only support.

Would you say the same if the child was diabetic though or had Cystic fibrosis or anorexia? Or are those ‘proper’ medical conditions.

[NeverDropYourMooncup]

@Thatboymum

I have one with diagnosed adhd who is medicated and I actively sought that support but also have another who school referred to camhs as they believed he was autistic and camhs after 2 appts confirmed they agreed but couldn’t diagnose and asked me if I wanted him referred further and explained it’s a huge wait list and I said no . My reasons for that is because he’s high functioning and extremely mild, has amazing school support and I don’t feel he needs additional input or a label as for him it would change nothing However his younger brother desperately needed support and input so I got it

And when he struggles with relationships or gets fired from work because his 'high functioning' is no defence against abuse or immensely stressful environments - do you then wait for him to find out its not because he's incompetent at particular things and say once he's fallen to bits 'oh yeah, we did think it but you were so good at spelling, I didn't see the point in getting you legal protections or any foreknowledge of potential adult needs'?



My brother was 'odd' from infancy until death. No, he was Autistic, but it would have been too embarrassing for her to have admitted having a substandard child in her eyes. Might have saved him bullying at work, got higher qualifications and a job more appropriate for his intelligence, maybe he'd have had a relationship.

[Gysophilla]

I should add that a diagnosis is helpful, as DD gets extra time for (inter alia) severe processing delay. I guess my point is that the quality of nhs assessments in such a over stretched system can be questionable and I would suggest seeking second opinions or looking at specifically targeting any of the behaviours that impact learning and social skills. Eg SALT can help with social stories, an OT can help with sensory processing. These essential therapies are not automatically offered with an ASD diagnosis, one would have to be seriously impaired and at a specialist school for autism to access them in the area of London we live. I note it may vary wildly from one postcode to another.

[Punxsutawney]

he’s high functioning and extremely mild.

'Mild' will be the way you and others experience his difficulties.

[ChocolateSpreadOnToast]

I think you need to stop caring what other people think. A diagnosis enables me to push for additional support or ensure reasonable adjustments are made. I don’t give a shit what anyone else thinks. Equally I’m
tired.

[Bearsporridge]

@Gysophilla

I agree OP. In between the nhs diagnosis and subsequent revision, DD was labelled autistic as a slur by some very mean children (so she now sees it as an insult), and some parents told me they wouldn’t have her over as they “didn’t know how to handle” autistic children. I was the subject of a lot of gossip. Absolutely awful.

I’m sorry that you met such ignorance. There’s still a long way to go in shifting the paradigm from “let’s beat up the weird kid” to accepting and treasuring neuro divergence.

It’s really hard having to advocate. I can only do it in spurts. Looking at the people I know, the creators of web content that I consume and famous people, I’m concluding that all the interesting, creative people are neurodivergent. For a long time I thought of it as something wrong (and don’t get me wrong, it can be hard and very, very challenging) but it’s a really important neurological variation.

And as parents we have to get schools and services to buck up, and not fail our kids because the world needs them.

[Thatboymum]

@Punxsutawney

he’s high functioning and extremely mild.

'Mild' will be the way you and others experience his difficulties.

I am autistic myself diagnosed as a young adult and we are worlds apart from each other. His only difficulty this far is loud noises. He is extremely clever sociable and well beyond his years meeting every milestone Both school and camhs agree that there is nothing they can offer him and he would be waiting years for a formal diagnosis which would offer no support to him as he doesn’t need it. To meet him you would not directly ever even assume he was autistic. Of course it’s down on his medical records that camhs suspect autism and if at any point i feel he needs support or firm diagnosis at any point in his life I would get it for him whether that means having to go private etc But at this point he has no need and nobody including myself has any concerns

[Mummummummumyyyyy]

@eyeteevee

It's an utter disgrace that refusing a medical assessment is even an option.

We live in a free society thankfully.

[Howeverdoyouneedme]

Agree you need to stop caring what other people think. My youngest has a diagnosis and receives 1-2-1 support at school. I tell people so they understand, it all helps. Helps my child be accepted and adapted for and pave the way for a better future for children with these sort of needs.

[Miffee]

I went back and forth and ultimately started the process twice only to disengage both times.

They're 18 now and doing really well. They had a lot of protective factors primarily because of their personality, family and interests.

It was a risk benefit analysis for for me and it was razor thin. The primary risk for not getting one was although they didn't need support now they may need it in future and it would be much harder to get. I lived (and still live to a lesser extent) in fear I made the wrong choice. I have spoken to them directly about it and they are happy without it at the moment.

Another thing to mention is that, although in retrospect it was glaringly obvious, I didn't see it until they were 11. Once I did I was amazed I was so oblivious. The school tried to get them on the pathway when they were in infants but I thought they were mad.

Currently I feel I made the right choice but I cannot say for sure. I wouldn't offer advice. I think it is top dependent on a number of things.

Not getting a diagnosis seemed to work out well for my child but that is due to a very specific set of circumstances.

Obviously because they don't have a diagnosis I cannot say for sure they have ASD.....but they do... nobody I have spoken to about it has ever raised a doubt. They're fairly textbook.

[orbitalcrisis]

@Thatboymum You really should get your son diagnosed. The waiting list is years long, by the time he needs help it will be too late. There is no such things as mild autism and I assume you mean he has a high IQ when you say 'high-functioning' (functioning labels were based on the person's IQ as measured by a standard IQ test which is no measure of anything but how good you are at passing IQ tests. It is an unhelpful and insulting measure. We now say low support needs.) but mainly that means that he is masking. His mask will slip.

[PomegranateSeed]

I’m accredited in the use of standard autism assessment tools, the AOS-2 and ADI-R both of which are used as part of a neurodevelopmental assessment. It is a very lengthy and thorough process in my experience. I became interested in this specialty partly due to my core profession but mainly due to my lived experience of having an autistic child who has been severely let down by the school system and is recovering from school trauma.

My child is very academically able and without a diagnosis it would have been very difficult to access the necessary support and get an EHCP. They will need this in order to finish their A Levels. It has also given them a context for feeling out of synch with their peers, that is they know they find certain things a bit more difficult at the moment because they are autistic. The alternative narrative for them was they were a failure. I know which one is preferable to them.

Autism isn’t a superpower, it can be disabling due to a number of reasons. Thankfully we have a neuroaffirmatve wider family who are totally accepting.

A lot of my colleagues write reports for people wanting to join the military. It’s nonsense really because of course there are a lot of undiagnosed autistic people in the military.

[coodawoodashooda]

@Miffee

I went back and forth and ultimately started the process twice only to disengage both times.

They're 18 now and doing really well. They had a lot of protective factors primarily because of their personality, family and interests.

It was a risk benefit analysis for for me and it was razor thin. The primary risk for not getting one was although they didn't need support now they may need it in future and it would be much harder to get. I lived (and still live to a lesser extent) in fear I made the wrong choice. I have spoken to them directly about it and they are happy without it at the moment.

Another thing to mention is that, although in retrospect it was glaringly obvious, I didn't see it until they were 11. Once I did I was amazed I was so oblivious. The school tried to get them on the pathway when they were in infants but I thought they were mad.

Currently I feel I made the right choice but I cannot say for sure. I wouldn't offer advice. I think it is top dependent on a number of things.

Not getting a diagnosis seemed to work out well for my child but that is due to a very specific set of circumstances.

Obviously because they don't have a diagnosis I cannot say for sure they have ASD.....but they do... nobody I have spoken to about it has ever raised a doubt. They're fairly textbook.

What became obvious at 11?

[orbitalcrisis]

This whole thing of not 'labelling' a child is ridiculous, humans label everything, it's how language evolved! We all know that what you mean is you don't want an undesirable label attached to your child. Your ablism will not help them come to terms with their autism in the future.

[Dalekjastninerels]

OP

I would get the diagnosis for your child; but this can be information you disclose when necessary, that is to teachers etc.

This is information for you and your child; not a label- share the information where and when you feel comfortable.

Your child's teacher will need to know, the random shopper at the supermarket not so much.

[PomegranateSeed]

My child’s difficulties did not become obvious until the transition to secondary school. This can be a fairly typical presentation. When the demands increase the difficulties become more obvious. My child has a PDA presentation.

[TigerRag]

@Mummummummumyyyyy

We live in a free society thankfully.

There's one thing you not getting a diagnosis because you don't believe it won't benefit you. But why deny your child that? I really could have done with the extra support at school; but without a diagnosis, I could not get that.

[FivePotatoesHigh]

Your dc won’t be less autistic without a diagnosis but it’s a much harder path.

100% this.

[itsgettingweird]

We live in a free society thankfully

No we don't.

We live in a society where parents have a responsibility to act in the best interests of their children.

Their rights to make decisions do not supersede this.

Plenty of cases online to prove this fact.

[Hotpinkangel19]

My son has autism. Having him diagnosed didn't open any doors to any extra help and support - but it has helped him understand himself better and why he feels different to his peers. For that alone, the diagnosis was worth it.

[Miffee]

@coodawoodashooda

What became obvious at 11?

A number of things. It wasn't to do with them changing as much as me connecting things together.

That was the first time they were referred. I realised before they went to high-school and then, as I feared, they had a rocky transition. Mainly to do with organisation (being late all the time, forgetting books etc). Then before things really got going it all resolved (not magically, we had to put strategies in place) and they were happy so I disengaged.

[Autumflower]

My parents didn’t get me any help or a diagnosis,it lead to suicide attempts,depression,feeling like I’m a failure because I can’t manage life as well as the next person ,I had eating disorders ,every one ,anxiety.fucked up my qualifications because I had no support with exams ,,every fucking thing was more difficult than the next person found it ,and I just concluded I was stupid.
with a diagnosis help would of been available for me.
i am now no contact with both parents ,they let me down badly ,they can rot .
my doctor has supported my application for autism assessment and that is nearly finished now ,I’m at the last stage with everyone agreeing so far I do have it…but i knew I did ,when my own children received their diagnosis

[justmaybenot]

@orbitalcrisis

This whole thing of not 'labelling' a child is ridiculous, humans label everything, it's how language evolved! We all know that what you mean is you don't want an undesirable label attached to your child. Your ablism will not help them come to terms with their autism in the future.

I agree with this. I pushed to have my dc assessed and his school said ‘what’s the point of labelling him’ as there are few supports available where we live. But I persisted and he was finally diagnosed. While he was coping well when younger, this changed at ages 11-12 when socialising changed from structured activities to more free-form hanging out, chatting etc. The way the psychologist who talked me through the lengthy report put it - the social challenges exceeded my dc’s capacity to meet them.

the diagnosis has helped in self-understanding and made me more patient and in general the wider family more inclusive and thoughtful. You’re denying someone part of their identity and a means to greater self awareness if you refuse an assessment - besides skewing the statistics, and impeding their ability to access whatever help might be available.

[Thatboymum]

I actually have to say to everybody that has responded to me even the rude-ish people you have given me some food for thought and I possibly will now re evaluate my decisions as reading some have made me realise I haven’t really considered the future and have based my decisions purely on the present. So appreciate the Input and views

[Mahanii]

It is clear to me that my dd has asd and adhd, however she masks all day and so school haven't picked up on it (and have labelled me as neurotic) so she wouldn't get a diagnosis even if we wanted one. However there is NO WAY that my dd would want to be diagnosed. As a high functioning, expert masking, desperate to fit in, pre-teen girl, an autism diagnosis is an absolute no - it is her that doesn't want that label. I'm really worried for when she transitions to secondary and her usual coping strategies may not be enough.