DD(13) saying she doesn’t want to come on holiday with us next week

[PinkCamellia]

I posted earlier about an upcoming trip to Iceland but thought this warranted a separate post. I don’t normally make a fuss of my birthday but as it’s my 40th and it’s been a really difficult few years, I’ve booked for me and teen/young adult DC to go for four days to Iceland.

At the time I booked, DD wanted us to go to a particular European country and was upset with me for choosing Iceland. Since then, she periodically says she doesn’t want to come and has even cried at the thought of coming. She says she doesn’t want to do any of the activities I’m planning and there’s nothing she wants to do there. I’ve tried selling it to her that we’ll eat nice food, so interesting things, be in beautiful scenery but she says she doesn’t care about any of that.

I’m so worried about her at the moment. Since hitting 13, things have unraveled for her. She’s completely stopped attending school and does nothing except play on her computer with her friends. She has no interests except gaming and baking and she’s put on a lot of weight in a short time. I feel like she must be depressed but she says she’s not. I think she might be ASD and we are awaiting an assessment.

What do I do? It won’t be the same without her and I worry she will regret not coming but equally the prospect of dragging her round or being stuck in the hotel with her doesn’t feel great either. Feeling really stressed and sad that my birthday won’t be what I hoped. And of course so worried about DD 😔

I think assessment is great yes, for ASD. But also bear in mind, if it's also hormonal, this is part of puberty. Also, in a lot of cases, PMT mimics thyroid conditions, so I'd get a test done there too. I didn't get the latter sorted out until I was in my 30s.

@Gonnagetgoingreturnsagain

Valid point about hormonal issues.

Very often women with autism develop endometriosis which can be triggered and exacerbated by stress with underlying autoimmune aetiology. Similarly, many develop under active thyroid and so forth.

It can be the case - as happened with me and my cousins - that the hormonal and period issues are seen as the predominant issue. When actually they were symptomatic of us all being autistic, inappropriately supported and extremely stressed out.

If the autism is ruled out then of course look at hormones/puberty being the problem. But often it is symptomatic in autistic women, not causal.

I’m hearing everyone saying about the world being NT therefore ND have to fit in…

To a certain extent I agree that this is true; you should implement discipline, boundaries, and aim to integrate autistics as far as is possible.

However, where it is clearly causing them illness, raising stress, and potentially harming them, it’s going too far.

My view would be that diagnosis and implementation of maximum support and intervention as early on as possible is key in order to help and protect the person. We are all different; some children will be more resilient, others very vulnerable, some developmentally as mature as their peers, some 2-5 years behind (and this isn’t always obvious)….very often it is hard to tell which sort of child you have until looking back retrospectively. Due to this, I think it’s better to have all the support heaped on, and then scale it back as far as you can…. Rather than tough love saying they need to fit in - you run the risk of them developing mental and physical health problems and suffering injury or assault if you do nothing…. Anyone undiagnosed and without support who survived unscathed is pretty lucky (when you look at the statistics).

Regards support beyond school - I know many, particularly in the civil service, admin and IT sectors with special provision - a lot work from home, some have flexi time, in a few work places there is a specific room for autistics to work in where they don’t have to engage with small talk and they are away from the noise of the main office. Some employers actively recruit autistics. There are also a lot of creatives - graphic designers, artists, writers and so forth who have their own businesses or work freelance…. So to say that autism can’t be accommodated in the workplace is a bit absurd. It’s a disability protected by law.

@PinkCamellia
I’m really glad she has said she will come, give her space to talk about her anxieties and as much preparation as you can. Find activities and calming exercises she can use to help (grown up version of a calm box), the visuals really help us if going somewhere new so lots of pictures, videos, street view of where you are going. And go through the activities and schedule for the trip as well so she knows what is coming. Good luck!

Why should we ‘aim to integrate autistics as far as possible?’

For me, that narrative reminds me of the way ethnic minorities who immigrate have been told to ‘integrate’ and not maintain their own language and culture.

But the rest of your post, I agree with.

Isn’t It the case though, that every ND person is different. ASD or ADHD or any other diagnosis, will have differences in every person diagnosed, so it is t possible surely, to say what should happen, or what expectations should be, for every ND person.

Reasonable adjustments, of course, but there are some rules, boundaries and expectations that have to be met, whether a person is NT or ND, simply in order to function in the world, confusing as that may be.

OP knows her child best and knows where and how much she can push. Clearly, school attendance isn’t something that she can push for, but maybe some boundaries and restrictions on the use of phones for gaming is a possibility. OP’s daughter is 13. Diagnosed or not, there are some things that have to be non negotiable, in order to function in a world that will not accommodate and adjust for every different condition and diagnosis. Adjustments, yes, certainly.

@WaitingForMojo

Because for the vast majority of them they should be able to go to mainstream school, to partake in sporting and leisure activities, to drive, live independently, pursue a career of their choosing, have positive relationships, travel, children if they wish.

That is what I mean by integration; they shouldn’t be ostracised from society and forced to sit at home due to lack of support, facing prejudice and so forth.

They should be allowed, supported and welcomed to have all the good things in life as much as any other person… unless trying to get them to engage with any of the above would be harmful to their health.

@Bluevelvetsofa

Clearly there is a spectrum and varying needs and presentations.

However, you go from the standpoint of maximum support… for all

1. get diagnosis (often there is cormorbidity too - ADHD, DCD, dyslexia, learning difficulties, SPD, ODD, OCD, eating disorders, mental health to name a few of the possibilities)

2. get intervention support via NHS, private providers, charities this is tailored to the individual

3. apply for PIP so there is money to pay for medical treatment, therapy, beneficial activities, aids, extra or specialised training or tuition etc all tailored to the individual

4. jump through all the hoops with school system in a step wise process until problems resolve or max support reached. if at uni it’s disability services, OH and DSA. At work if you aren’t self employed you are looking OH, HR etc sometimes with charity/legal support.

Essentially it isn’t one shoe fits all and the processes across the board are set up to recognise that to meet the needs of the individual person.

Look up ebsa guidance and seek advice from your local authority or the school if she's still registered there

This, sorry 🤷‍♀️

@Bluevelvetsofa

Oh and regards boundaries, expectations and rules.

How you manage that is dependent on the diagnosis, whether there are one or multiple comorbid conditions and really you need expert advice and training to be able to suss how to manage it and what will be possible.

Totally different to managing a NT child.

Just a thought.... Are you planning on wanting like the blue lagoon..... Could she be self harming and you don't know and she's panicking about how to get out of it being seen?

I've got a 13yo who was fortunately diagnosed younger. There is no back-up option for him not to come with us. We have made compromises about holidays e.g. booking a caravan instead of camping due to noise level, but he returned the compromise that because we spent more and freed up car space we would take bikes and he had to join in. We have a lot of down-time on holiday. Tedious for me, but he just doesn't cope with doing multiple transitions back to back. He likes the familar so we do end up in chain type places, or Chinese/ Indian restaurants that are quite consistent. Planning an itinery is often helpful for managing expectations. I also talk about Plan A and Plan B if there is some doubt in the mix so Plan A isn't too fixed.

That might not help OP this time with the time left, but there might be chance to have productive conversation about the issue.

If it is too much for her to process, it might be better for her to stay with grandparents this time and adjust planning next time around. Learning and giving in are not the same thing.

ASD is hard to live with on either side of the condition. Teenage hormones are also hard and unsettling on top of that. It's tough to unravel what is autistic thinking and teenage hormones, when to stand firm and when to give, how to balance the big picture and how they feel now.

Boundaries matter, and they need to be purposeful. We've suddenly hit resistance over extra curricular activities. DS is allowed 2 hours of screens to zone out after school- he's not fit to process anything else before that point, but I am persisting with other activities later in the evening because his brain and body need that change of gear and it works better doing something external and fixed, especially over the winter. I've told him that he is allowed the screen time because of other activities and if he doesn't do them, I'll be more restrictive about the screens for his wellbeing. It's hard because his other conditions of dyslexia and dyspraxia affect his enjoyment level of other activities. Reading will not calm his frazzled mind!.

Essentially it isn’t one shoe fits all and the processes across the board are set up to recognise that to meet the needs of the individual person.

Disgnosis can take years to get if you’re going through the NHS, schools aren’t set up to offer individual supports no matter how much teachers may want to, getting any kind of support is an absolute battle because of lack of resources. The processes you speak of simply aren’t in place other than on paper unless you have the knowledge, time, energy and money to fight for them.

Given that, parents are often feeling their way parenting their children and, to an extent, children do need where possible to cope with mainstream schooling, education and daily living if they are to have a life beyond screens and isolation.

What you’re describing in terms of personalised, stepped, individual support is utopian. I know the systems well and can cut my way through the processes and I still find it difficult to get the most minimal support for my DC, parents without that ability have next to no chance of finding tailored support.

@Jellycatspyjamas

If the issues are substantial enough to warrant 1:1 or withdrawal usually the child will qualify for DLA.

We put DC on list for autism assessment NHS, then put private assessment on credit card, once diagnosis confirmed we applied for DLA and used the first few payments to cover private assessment. We then got the assessment sent through to NHS (having checked private followed NICE guidelines beforehand), assessment was ratified and we got access to NHS services.

ADHD, OT etc was quicker and didn’t need to go private but did pay private for Ed psych report (which is handy as extra evidence and provides a point of comparison to school Ed psych).

We went through all the steps in school to prove there was need and kept on pushing on gathering evidence. At one point I was up to 2-4am writing, scanning on documents and collating it all into a report.

I do this anyway and have an academic background which helped. But most of the guidance on how to access support was from autism and disability charities - they were amazing. You have to be doggedly determined and essentially it is like having an extra job.

My experience without diagnosis and support was so bad that it made me very motivated to help the DC. Incidentally I wasn’t diagnosed until after they had been!!

At this point we have all almost in place and I think for the time being we motor on with the supports given, OT and implementing all the strategies we learnt from training (sat through several courses and workshops… again largely online and late at night). If there are further issues we seek reengagement with autism services and further referrals, Adhd is monitored at clinic.

The support is there. But it is a fight and you have to be good with paperwork.

Regards Uni support it’s much easier - I had equipment provided, software, note taker, mental health support, DSA for extra costs, special support grant (that’s changed now) and OH and disability support worker…. I mean it was great, one meeting and all in place before I started my course.

For work I WFH, as a lot of my autistic friends do, but those I know in more traditional workplaces have accommodations and support. Can’t speak for all obviously.

Ps I have cared for multiple family members with health issues and dealt with DLA/PIP for them so admittedly I had experience in how to cope with it and cut through the NHS as far as possible to avoid ridiculous waits.

However, all the information relative to that is provided via autism/adhd and disability charities and they support parents in pursuit of support too.

Having the NHS ratification of private diagnosis is what unlocked the key to school and NHS support…. Without the paperwork stating diagnosis and needs as evidence you get sod all.

@Garmadon you clearly had the time, energy and money to do what was needed, many parents simply don’t. You outlined a process of individualised, stepped supports suggesting these are universally available, they aren’t, it really is like a second job - it certainly was for me too.

If you’re looking at 1:1 or school withdrawal the child is significantly disabled and yes there can be more support available but the vast majority of children withdraw because there is scant support at an earlier stage and their coping strategies break down. If the right support was available at the right time they may well have sustained schooling, but it isn’t.

@Jellycatspyjamas

We put the private assessments (£850;£650 2 years between) on credit card. The DLA paid for them.

I stayed up until 2-4am repeatedly to work - I ended up ill at certain points.

Support available can differ across the country but there is always something there and the process across the education sector is uniform.

The onus is entirely on the parents to engage with courses, to find out about therapies and strategies, to pursue everything and educate themselves on the processes to access support involved. It has taken us the guts of 3yrs to get this far and it is exhausting. You are not handed anything - you have to find a way to work to access the support.

My point to the other poster was that the therapies, strategies, supports within the education sector, NHS and work environments are entirely based on the needs of the individual and is tailored to the individual. You are right that it does require a lot of work to get it.

I agree with you regarding support being needed earlier - we were very on the ball and fought so hard but had support delayed 2 years due to the covid crisis and fiasco trying to get anyone professional… then the backlog was horrendous. This has really adversely impacted the DC and I’m furious about it.

My objective from the beginning was to get the assessments and admin over as early as possible so they’d barely remember it and to get it to a point of stability and annual review. Mainly because the teenage years are diabolically difficult as an autistic and I couldn’t fathom I’d have the capacity to cope with that and meet needs at the same time as admin and trying to maintain sanity and some sort of a life for myself.

Totally agree. My DGD is demand avoidant and the other DGD is ASD. Both have totally different needs but the demand avoidant one particular needs a gentle parenting approach or the meltdowns would be awful which impacts severely on the ASD sibling. She uses screen to regulate probably as escapism from surroundings but she is only on it for 10-15 minutes which is enough to calm her. Not every autistic child fits the same mould in much the same way NT children aren't the same. One of them likes a structured day but can cope with holidays and different environments. The other demand avoidant one hates any change and prefers to stay home where she feels safe. All any parent can do is support their kids the best way they can. Pushing them to do something they are really uncomfortable with wouldn't be a pleasure for anyone. Pick your battles.

Obviously lots going on. I'd be on the side of your daughter.

Is she in burn out where she needs to stay at home plus the anxiety of everything is too much? Or is there a compromise where you can take her laptop so if she hates it she can just play computer games in the hotel? Take a switch for the plane?

Or is there something to do with transitions / planes / anxiety / scared of the unknown of a new area plus worries about safe food options?

Personally I'd let her decide if there are options for her to stay at home. No point taking her if she truly doesn't want to go.

Or I'd actually change the holiday to a venue she fancied and then she would come.

ASD / mental health just really difficult- I have to go to the same places / or get approval every yr so I can get my ASD / PDA DC on holiday. You can't drag them there / they will have a melt down and then everyone has a rubbish time 🤪 I'd be listening to your child.

Obviously my other NT children they don't care they go anywhere and everywhere but ASD is hard - so I'd consider her feelings more.

If I was you - I'd change venue from Iceland to where your daughter wants.

Hope you manage to enjoy your trip 🤞

@Catsdogsorpandas This is the OP’s 40th birthday treat though and she’s allowed to do something for herself. Given that the grandparents are willing to look after her DD, I personally think that the OP should enjoy this break with her older. children and leave her youngest with the GP’s.

Parents of ND children need to sometimes do something for themselves.

Leave her with grandma. You will have a much better time without her. And definitely bin the gaming console. You can tackle her behaviour as a whole when you get back.

@BruFord

Parents of ND children need to sometimes do something for themselves.

This is so true.

I booked a weekend away with girlfriends last year - it was the first time I felt like I could breathe in a long time!!

Heading away with DH for a few nights later in the year and I am so excited!!

It gives you more capacity to cope if you invest in self care and respite where possible.

Support available can differ across the country but there is always something there and the process across the education sector is uniform.

I’m in Scotland, the process is far from uniform even in terms of thresholds for support, assessment and intervention. One local authority will offer assessment at a relatively early stage, others won’t offer assessment until the child is practically withdrawn from school, others will informally exclude and still not offer any support for assessment. From my reading in here it’s the same south of the border.

Different CAMHS services also impact, our CAMHS offer is actually very good comparatively speaking - I still felt like I was defending my MA getting my DD a service.

It’s ridiculous to have to work so hard for the most fundamental of supports but, yes it can be done.

She's being extremely selfish. It's your birthday and she's in a huff because she didn't get to go where she wanted to go? Even if it wasn't your birthday, you're the adult and it's not really up to her where you go on holiday. I just think it's particularly bad that she's trying to be difficult about a holiday that is your birthday treat.

If you can get someone to watch her while you're away I would just leave her at home. I'd be worried that she'd just moan and sulk and ruin the holiday. Maybe she'll regret not going when she hears all about it afterwards but that's called natural consequences.

I do think you need to address the not attending school and gaming. Confiscate the gaming console. If it's becoming a problem, which it clearly is, you as the adult have the power to do something about it. Is there a school counsellor or something you could go and see?

@Jellycatspyjamas

I wasn’t talking about assessment - this is notoriously bad - and all you can do is collate evidence as far as possible to push for referral. I produced 5k word essay and got the school/nursery teachers to do the same to support referral. Then went private to avoid more than 6m wait, before back into CAMHS following ratification.

The added problem is cut off dates. For example NHS only assess for ADHD between the ages of 6 and 11, wait list 1-3yrs so you may need to have them on no later than 8. We put our child who has it down on 6th birthday… if you miss the boat you can only go private, and a private report without NHS ratification does not hold the same sway.

@Bluevelvetsofa was saying it isn’t possible to say what should happen or what expectations should be for every ND person because they are all different.

I was trying to explain that in all cases it is important to pursue diagnosis initially as this opens doors to further support, then if needs require it you go via DLA/CAMHS/school SENCO merry go round, proceeding through until the maximum support you can get for the child is attained.

Each child will have an individual tailored outcome from engaging with services - some will need S&L therapy, others feeding support, some will need EHCP, some have motor issues…… but accessing the referrals, services, supports is a common entry route.

I hear you on how hard it is, hope you are managing some time for you and have support too. It’s not easy.