Page 25 | Is anyone the parent of a child with asd and not seeking a diagnosis?

BeserkGiraffe · 06/10/2022 21:13

EndlessTea · 06/10/2022 16:51

It may be that different areas have different things, but our CAMHS offered parent groups, liaison with the school, social skills training, signposting to local services (we the diagnosis during lockdowns so it was all a bit weird - stuff that would normally be face to face was done online, certain groups weren’t available, etc), they call us every few months to check-in with how she’s doing, how she’s coping socially, how she’s handling growing up, etc. We didn’t take a lot of it up because they didn’t necessarily suit her or our needs. They shared quite a lot of resources.

This is quite unusual, to my knowledge. Mostly CAMHS reject referrals for children unless suicidal - and especially for austistic children as they do not have the specialists with training and qualifications to provide appropriate therapy to them - and offer no alternative provision at all.

BeserkGiraffe · 06/10/2022 21:17

FurryDandelionSeekingMissile · 06/10/2022 19:54

I have diagnoses of, among other things, ASD and coeliac disease. I'm trying to imagine a thread called "Is anyone the parent of a child with coeliac disease and not seeking a diagnosis?" and to be honest a lot of the types of things people say when it's ASD would just never fly.

Like:

I don't want a coeliac diagnosis because I don't want to put a label on her, she's a lovely girl
We have a gluten free home and put him on packed lunches and he's fine, so he doesn't really need the label and the testing is stressful
The label will give him an excuse for things like his picky eating and spending so much time in the bathroom, it's better if he learns how to behave
I didn't want her to have the coeliac label because I don't want her to feel there's something wrong with her, or to put limits on her
He might want to go into the army when he's older and having an official coeliac diagnosis would prevent that, so we're avoiding that label
The label is given out too freely these days, people with barely any symptoms get a coeliac diagnosis. She's not like those poor kids with real coeliac disease suffering obvious malnutrition, who would've had that diagnosis even thirty years ago.
If he had the coeliac label, other people would make assumptions about him that aren't true — they might assume he's lactose-intolerant just because lots of other coeliacs are.
You don't need a diagnosis, access to gluten free meals in schools/hospitals/prisons/wherever should be provided based on need, so nowhere should be insisting you produce a medical diagnosis before supplying specialist meals
If she has a label I'm concerned she'll feel different to her friends, and she's actually really good at coping with the diarrhoea

👏👏👏

Thank you for expressing these prejudices so clearly through your equivalent examples. This is exactly what is wrong with how some people speak/ think about this.

Banana7 · 06/10/2022 21:21

coodawoodashooda · 01/10/2022 13:37

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?

We fought tirelessly for years to get a diagnosis because it was clear our son needed all the help he could get. It's been a long road, hindered by Covid, but all worth it as he now has the support he needs in school. Still very hard at home but at least, we feel there's light at the end of the tunnel.And our son is" high functioning", (even though I know the term is disliked by some). I know some parents might be against a diagnosis as they feel it might stigmatise their child but not getting them the support they should have to feel the best they can be is not in the child's best interests IMO.

BeserkGiraffe · 06/10/2022 21:24

Thank you for explaining. Sorry, it must be really frustrating to deal with people all the time not understanding, like me.

No, not at all. It's frustrating that people don't understand but it's nit frustrating if they listen, as you have, because that is how we slowly change things so that autistic children now and in the future have a very much better experience of childhood and adult life than I have. Thank you for asking the question and for listening to my answer.

FurryDandelionSeekingMissile · 06/10/2022 21:32

ParrotPoppy · 06/10/2022 21:13

You don't need a diagnosis, access to gluten free meals in schools/hospitals/prisons/wherever should be provided based on need, so nowhere should be insisting you produce a medical diagnosis before supplying specialist meals

I posted the equivalent of this, not because I think it should be a reason not to seek a diagnosis, as I also posted I think parents should pursue a diagnosis, but because people do need to be aware support is needs based, not based on a diagnosis. Not least because a diagnosis takes time and if they think support is diagnosis based that’s time spent without support when they could actually be supported. If people don’t know what should happen advocating for themselves/their DC becomes much harder, and sadly those who can advocate well get better support.

Agree, it's important for people to know what they legally have a right to expect, and not to assume that it's not worth asking until they're a firm diagnosis. It's great that people like you take the time to try and disseminate info and raise awareness about what can be done and what should happen.

But there's so many areas of life where someone may need adjustments or adaptations, and those things aren't always provided so readily to someone with no diagnosis as they would to someone who has one. Plus, once you leave school, you're doing all that for yourself, not having a parent to advocate for your needs. And it's so, so much easier, and sometimes more private and dignified, to be able to quickly show an official piece of paper with an autism diagnosis on it when necessary, and say "It means I need this and this", than to give more detailed evidence and documentation of specific difficulties.

Villagediary · 06/10/2022 21:32

This is quite unusual, to my knowledge. Mostly CAMHS reject referrals for children unless suicidal - and especially for austistic children as they do not have the specialists with training and qualifications to provide appropriate therapy to them - and offer no alternative provision at all.

Who/which team is responsible for doing ASD/ASC assessments for a primary aged child? The referral process seems difficult to navigate.

BeserkGiraffe · 06/10/2022 21:32

I am still unable to accept myself in my late thirties, 25 years after my diagnosis. I didn't know there was anything 'wrong' with me until my diagnosis. I knew I was quirky and a tomboy and the best in my grade at maths. With the diagnosis I felt like I lost my identity, like my strengths were not real strengths but symptoms.

Everyone my age seems to have been diagnosed in adulthood and had a very different experience to me.

I'm so sorry to hear this. I agree, it is not the norm from the many autistic women I know. What support did you have with processing and understanding the diagnosis?

Of course your strengths are real. Autism isn't like an add-on, it is an integral part of who you are and you are good at the things you excel at because you are you. It's not separable from you.

I am so sorry you've had this experience and I hope you can get some support to help you work through your feelings about it, finally.

FurryDandelionSeekingMissile · 06/10/2022 21:34

*until they have a firm diagnosis

ParrotPoppy · 06/10/2022 21:40

FurryDandelionSeekingMissile · 06/10/2022 21:32

Agree, it's important for people to know what they legally have a right to expect, and not to assume that it's not worth asking until they're a firm diagnosis. It's great that people like you take the time to try and disseminate info and raise awareness about what can be done and what should happen.

But there's so many areas of life where someone may need adjustments or adaptations, and those things aren't always provided so readily to someone with no diagnosis as they would to someone who has one. Plus, once you leave school, you're doing all that for yourself, not having a parent to advocate for your needs. And it's so, so much easier, and sometimes more private and dignified, to be able to quickly show an official piece of paper with an autism diagnosis on it when necessary, and say "It means I need this and this", than to give more detailed evidence and documentation of specific difficulties.

Show quote history

Oh I agree, and a diagnosis is important for so much more than support e.g. an understanding of oneself. It’s just so important people realise a diagnosis isn’t necessary for support as so many people think it is and people miss out on support.

BeserkGiraffe · 06/10/2022 21:41

Villagediary · 06/10/2022 21:32

This is quite unusual, to my knowledge. Mostly CAMHS reject referrals for children unless suicidal - and especially for austistic children as they do not have the specialists with training and qualifications to provide appropriate therapy to them - and offer no alternative provision at all.

Who/which team is responsible for doing ASD/ASC assessments for a primary aged child? The referral process seems difficult to navigate.

Usually a child is referred to child developmental services by a GP or nursery or school. Sit on a waiting list for a while. Then see a specialist paediatrician who will produce a brief report on indicators and decide whether to put the child on the autism diagnostic pathway, or not. Then - if placed on the pathway - depending on area you will generally wait for 3-6 years for the child to have a full assessment using the ADOS or similar to get a formal diagnosis. Disgraceful, but that's the norm.

As an adult it is different, usually. For incomprehensible reasons autism consultants still sit within CAMHS even though autism is not a mental health condition. A GP can refer you directly to them for assessment. Depending on waiting list in your area it can take anything from months to 6 or more years to be seen. The process may also vary by region/ county (I don't know) because everything in the UK is so fragmented, but this is what most people I know in various areas of England have experienced.

The wonders of the NHS. 😒

My comment about CAMHS was meant in terms of accessing support for mental health issues, rather than for autism diagnosis. But yes, the NHS is also rubbish at that!

MinervaTerrathorn · 06/10/2022 22:16

I'm so sorry to hear this. I agree, it is not the norm from the many autistic women I know. What support did you have with processing and understanding the diagnosis?
It's a blur really. I rejected the diagnosis and was unable to cope with the word autistic being mentioned in my presence. I remember reading information sheets that I couldn't identify with. I was angry and upset.

Of course your strengths are real. Autism isn't like an add-on, it is an integral part of who you are and you are good at the things you excel at because you are you. It's not separable from you.
Thanks, I do know that now as an adult, I didn't at 13.

I am so sorry you've had this experience and I hope you can get some support to help you work through your feelings about it, finally.
I'm not sure about accessing support. I have anxiety around health professionals and 'protect' myself by telling them the minimum need to know information only. I've never told any health professional that I'm autistic.

Thanks for replying to me. I'm finding this thread difficult as many of the bad experiences others have had as children or in adulthood I've had as well, despite being diagnosed.

WahineToa · 06/10/2022 22:24

@@FurryDandelionSeekingMissile

I join others in saying what an excellent post earlier 👏🏾👏🏾👏🏾

BeserkGiraffe · 06/10/2022 22:25

I can imagine. It's extra hurt on top that not only did you go through all of that but now you feel alien too, to other autistic people saying the opposite of how you feel and what your experience was like. I am sorry if anything I said upset you further.

It sounds to me like you really need some support to work through all of this. If you don't like to speak to health professionals (believe me I get this!) there should still be support you can access. My area is so, so underfunded but there is a support group for women with autism. We have a fb group and whatsapp, some online meetings, some meetings in person sometimes for those who want to. I have found the support from that immensely valuable, the shared experiences. Is there anything like that where you are?

MinervaTerrathorn · 06/10/2022 22:45

I can imagine. It's extra hurt on top that not only did you go through all of that but now you feel alien too, to other autistic people saying the opposite of how you feel and what your experience was like. I am sorry if anything I said upset you further.
It's difficult but I know everyone is just describing their experiences. It's mostly just the experience of diagnosis that is different. Many other experiences on here I identify with, such as poor mental health, not achieving what I 'should' have, DV and so on.

I haven't really looked to see about support groups or anything like that yet. I've heard of things being run by one organisation but I think it was in the day so aimed at people with different support needs to me.

WindyKnickers · 06/10/2022 23:09

My DD is 11 and has quite a number of ASD traits. I've always suspected she might be on the spectrum but to a very low level. I know her dad (we are seperated) would dismiss my concerns and never agree to seeking a diagnosis. She is very well adjusted socially (makes friends easily, is in lots of clubs) and capable academically (above average SATS, finds school work easy in general) so it's not obvious unless you know her well. I've put it off so far because I don't want her to think that I think there's something wrong with her or for her to go through lots of tests and screenings if it won't really benefit her much. Like I say, it's just traits, she doesn't really struggle. She is hyper sensitive to sensory information so we have to avoid certain things (like sand) and we've adapted her bed time to better suit her needs (weighted blankets, low lights, music) and to maximise her sleep. She can't ride a bike and can't tell the time but we persevere with these things. We develop coping skills as a family and help her to help herself but I don't see how giving it a label would help.

Orders76 · 06/10/2022 23:29

I was told by a professional that the diagnosis was something required relevant to the level of assistance required.
In other words extremely high functioning and social girl...it might be useless. The other thing is unless high level needs, I was against assessment before age 7 or 8. I wanted a very true picture.

We went to a multi disciplinary team for multiple types of interaction in the end, home school and parental visits to the office. I feel there was a huge benefit to this approach as the child was seen independently in multiple settings and received the appropriate diagnosis.

So, consider carefully and be open to choosing a good age to get a full picture.

BeserkGiraffe · 06/10/2022 23:44

MinervaTerrathorn · 06/10/2022 22:45

I can imagine. It's extra hurt on top that not only did you go through all of that but now you feel alien too, to other autistic people saying the opposite of how you feel and what your experience was like. I am sorry if anything I said upset you further.
It's difficult but I know everyone is just describing their experiences. It's mostly just the experience of diagnosis that is different. Many other experiences on here I identify with, such as poor mental health, not achieving what I 'should' have, DV and so on.

I haven't really looked to see about support groups or anything like that yet. I've heard of things being run by one organisation but I think it was in the day so aimed at people with different support needs to me.

Generally there are different ones. Again terminology is questionable (!) but locally to be there is "low intensity management" for autism, which mainly involve us talking to each other online or in person or in organised video calls (you can attend/ participate in some/ all of these as desired, at any point). I also have a monthly call with my autism consultant and she supports me hugely. I am sure there must be something like this where you are even if not the same exactly, you should not be struggling all on your own.

And if you are, and think it would help, please also feel free to PM me. I am rubbish with messages so may not reply quickly, but I will reply.

BeserkGiraffe · 06/10/2022 23:46

Sorry for typos. Long, long day. I must sleep.

MinervaTerrathorn · 06/10/2022 23:56

BeserkGiraffe · 06/10/2022 23:44

Generally there are different ones. Again terminology is questionable (!) but locally to be there is "low intensity management" for autism, which mainly involve us talking to each other online or in person or in organised video calls (you can attend/ participate in some/ all of these as desired, at any point). I also have a monthly call with my autism consultant and she supports me hugely. I am sure there must be something like this where you are even if not the same exactly, you should not be struggling all on your own.

And if you are, and think it would help, please also feel free to PM me. I am rubbish with messages so may not reply quickly, but I will reply.

Show quote history

I've found the organisation where I had seen a group advertised before, and there is an evening group but that's for late diagnosis/considering adult diagnosis and associated challenges. The other groups are in working hours and I work full time. I'll have to keep looking!

Thanks for the offer to PM and for understanding my situation.

BeserkGiraffe · 07/10/2022 00:18

Mumwithsons · 05/10/2022 02:44

someone clueless tries to start drawing a comparison between their non-verbal, autistic boy with learning disabilities and a grown woman with autism and no learning disabilities who is verbal the neurodiversity movement says that there is no severity difference, and that the ‘learning disabilities’ are the difficulty and not the autism.

This is also nonsense.

There is no "neurodiversity movement". 🙄🙄

Neurodiverse people are trying to get neurotypical people to understand them better. This all goes back to the "oh, we're all a bit autistic" nonsense.

The autistic spectrum is a spectrum if the different strengths and weaknesses if autistic people.

There is no such thing as being "a bit autistic". 🙄 Anyone on the planet would probably have some trait associated with autism. Autistic people have many, many of these across different diagnostic "categories" and that are unchangeable and present since early childhood i.e. wired in and not resulting from something else. Exhibiting maybe one or two behaviours associated with autism by people who know little about it does not mean someone is autistic.

It's so insulting to those who live with this that people still spout this nonsense when they could read up on it for free if they wish to. If they do not wish to, they should shut up until they have.

The autism spectrum is a spectrum (clue is in the name!) of how autistic people are different to each other. Not a scale from neurotypical to autistic.

Other issues like learning difficulties may overlap with the autistic spectrum like a venn diagram. We know ADHD does, as does dyspraxia etc. But neurotypical people are neurotypical people - on their own spectrum of course with different strengths and weaknesses - but they really need to stop saying stuff like "a bit autistic" or "severe autism" or "high functioning". It's appalling.

There is no evidence for this - quite the opposite. Studies show the people society classes as "high-functioning" are often in more distress because of the higher expectations on them plus the toll that masking takes. These labels tend to be about how much the person's autism affects other people (like parents, school, friends, partners) not how much it affects the autistic person. Which means less support for those who mask, which is so damaging. Please do not use such terms, they are awful.

Orders76 · 07/10/2022 00:22

It's incredibly unfair to say we ( in autistic families) can't use have high functioning if we feel it's most descriptive after Asperger's is removed.
I can barely keep up so I use functional wording.

BlankTimes · 07/10/2022 00:23

@Summerlaundry

ASD is not a mental health condition.
It's neurodiversity. Very differnt.

You're right. So why the involvement of mental health professionals then?

IME, there aren't.
There were none involved in DD's NHS adult diagnosis, this was about 5 years ago.

After seeing GP to ask for referral and completing a very short AQ type questionnaire, the next step was to see a Gatekeeper about 6 weeks later who had her complete more questionaires to determine whether she had any MH conditions.

If the Gateekeeper had decided she had any MH conditions, she would have been referred to MH services for treatment and no ASD diagnosis would have been pursued.

In DD's case the Gatekeeper had no hesitation in referring DD for an ASD assessment which took place about 18 months later and ASD diagnosis was given.

I'm at a loss to wonder why you think MH professionals are involved.

Are you getting confused with the current NHS ASD adult diagnosis pathway?
The NHS are overwhelmed with demand for adult ASD assessments and in many areas they are telling adults to apply to Psychiatry UK for an assessment.
psychiatry-uk.com/autistic-spectrum-condition/

Orders76 · 07/10/2022 00:25

Psychiatry becoming inappropriately involved is a challenge for all autism families. Just finished a horrific BBC panorama documentary re mental health facilities.

1stTimeMama · 07/10/2022 00:28

Getting my son diagnosed is one of my biggest regrets. He has one job he wants to do in life, and they don't accept applicants who are autistic. I may well have ruined everything for him, for no reason at all.
He is home ed, so doesn't need any school help, and the only way I think a diagnoses has helped is for me really. It gave me a better insight in to him and his struggles and has helped me to understand him better, but I could've done that myself if I'd researched things even more.

BeserkGiraffe · 07/10/2022 01:02

Orders76 · 07/10/2022 00:22

It's incredibly unfair to say we ( in autistic families) can't use have high functioning if we feel it's most descriptive after Asperger's is removed.
I can barely keep up so I use functional wording.

It's incredibly unfair to tell people they are "high functioning" when research shows that having the cognitive ability to mask on top of being autistic actually causes a lot of additional mental health issues and that the "functioning" labels are assigned by non-autistic people in most cases who are talking about how much the autistic person's autism affects them, and how well they can pretend to fit into the roles expected of them, not about how much the autistic person struggles with things. Basically by "high functioning" you are saying "good at masking". And masking has been proved to be very damaging to mental health.