Help me make sense of someone with undiagnosed autism

Can't offer any insight (we have cats), but awesome effort you're making!

Firstly, well done, I have enormous respect.

At 12 he's also possibly starting with hormonal stuff that will make things difficult emotionally and behaviourally, and general 'stroppy teenager' stuff. We had a lad in Scouts who had pretty severe autism and he was getting progressively harder to deal with (poor phrase, I accept). His parents were great and we could be really honest with them, and we had open discussions with them about how it was tricky to separate the behaviours that were driven by his condition, which we we and they more than happy to make allowances for, and those that were driven by general teenage dickishness, which we and they were not.

Is there anyone at the school that you can speak to? They may be able to offer help that is less obviously 'professional' than taking him to a doctor.

Is there anyone at the school that you can speak to? They may be able to offer help that is less obviously ‘professional’ than taking him to a doctor.

We have spoken to the school (but the meetings aren't regular and have to be attended by his social worker and an independent medical assessor) and they agree that he has autism traits, but, as he won't interact with them either (basically he will not speak to anyone if he feels they are trying to get into his head - he'll happily see a dentist or optician, but anyone else gets the metaphorical door shut in their face).

Good point about hormones too – especially given he is trans so he may well be going through changes we don't know about (again, this is something he wouldn't discuss).

In our house we have a pot of jelly bean analogy - each activity (school / interacting with people / thinking about what's going to happen tomorrow / pretty much anything) uses up jelly beans and once they've gone then the only way to replenish them is to rest / sleep / sit in a darken room / whatever helps the person feel calm. Explosions / breakdowns / tantrums happens when the jelly beans have run out and can be triggered by anything that is not as they expect, in your case moving a bottle - probably a build up of lack of jelly beans over the day.

In my experience Autistic people like to plan and understand what is going to happen and don't like changes to the plan, they may not have told you about the plan.

Happy to chat in more detail if you need. Best of luck to you.

In my experience Autistic people like to plan and understand what is going to happen and don’t like changes to the plan, they may not have told you about the plan.

That is definitely the case here – if we say 'we'll do it later', then he won't rest. If we say 'we'll do it in two hours', he's fine.

Last night, when I tried to get him to explain what he felt I'd done wrong, he just said that I should have asked him to move the bottle. However, I had considered that (on the balance of past experience) he'd think I was being petty or silly by asking him to come out of his room, come downstairs and move a bottle from one shelf to another.

Firstly - as you know I think that anyone who fosters is amazing, and those that foster children with more complex needs are are so important. In our small borough alone we have over 900 children that need a home, and with fewer than 100 mainstream carers we are at the mercy of the hedge fund owned private independent fostering agencies who are exploiting an impossible situation.

Have you spoken with your Supervising Social Worker and the child's social worker? There will be specialist interventions that won't mean that he has to get into a room with a doctor (for example) - we will commission whatever bespoke services our young people need, so specialist mental heath support, people to work with your (birth) children to help them adjust, respite for you...whatever it takes to prevent a placement breakdown, which will always be the worse outcome for the child.

If your SSW or the child's SW aren't finding solutions, escalate it. Is there a Foster Forum or similar that you can attend? The Head/Director of the service will do all they can to maintain the placement, so don't take no for an answer. It is in everyone's best interests to provide all the support that you and your family need.

Well done, from your posts here you sound like you are handling things incredibly well.

Foster care, Autism, trans and puberty sounds like a proper maelstrom. Poor little sod.

In our house we have a pot of jelly bean analogy

This is more commonly known as Spoon Theory. I have friends who are Spoonies. "Are you coming out later?" - "Sorry, can't, out of spoons."

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Last night, when I tried to get him to explain what he felt I’d done wrong, he just said that I should have asked him to move the bottle. However, I had considered that (on the balance of past experience) he’d think I was being petty or silly by asking him to come out of his room, come downstairs and move a bottle from one shelf to another.

"I need your bottle moving, do you want to come do it or am I OK to?"

Is this a control issue do you think? He has little which is genuinely his so you moving stuff around feels like asserting dominance? Maybe.

My sister in law gets a lot of support from online communities, FB groups etc for her autistic kids.

However, at the weekend, I moved a jug that had some shells and stones he’d collected on holiday (he was soaking them to get rid of the salty smell) and he exploded ‘why?, why?, why?, why did you do that, why did you touch them’ being screamed at the top of his voice (I didn’t even touch his shells, just our plastic jug he’d put them in). Then, last night, I was putting the shopping away and I moved his water bottle in the fridge so I could fit stuff in and we had the same shouting and crying again. He then threw away the (brand new) bottle because I’d touched it. Of course we’ve fished it out of the bin and we’ll run it through the dishwasher which *may* be enough for him when he has calmed down, but I am trying to make sense of these reactions.

I hope this doesn't sound patronising but if you think of a persons capacity for dealing with problems being like a bucket of water such that doing relaxing stuff removes water, doing something stressful adds water. You can hold those problems in until it gets full then you get cross. Well, it could be that in your boys current state, he is so stressed out already that his bucket is brimmed, and so even a minor annoyance is enough to cause it to overflow.

So really the rage you witness is from all the other stuff that's filled his bucket, not the minor thing that caused it to overflow.

Again I hope this doesn't patronise you but my daughter has some mental health issues, and having it explained to me like this helped me to understand why she flies off the handle and completely loses control over seemingly trivial stuff sometimes (e.g. not being able to find her toothbrush this morning, which didn't matter anyway as she has a number of spares - the real issue is her anxiety about having a new teacher, classmates mixed up, and so on).

my parents fostered a series of kids when i was about 12 or so. they had someone come round from the council (i assume) regularly to offer help and advice. do you have this?

Have you spoken with your Supervising Social Worker and the child’s social worker? There will be specialist interventions that won’t mean that he has to get into a room with a doctor (for example) – we will commission whatever bespoke services our young people need, so specialist mental heath support, people to work with your (birth) children to help them adjust, respite for you…whatever it takes to prevent a placement breakdown, which will always be the worse outcome for the child.

Absolutely have and we have regular meetings with a mental health worker who gives us coping strategies, tries to get us to see things from his side of the fence. His SW is utterly ^&$%ing useless though.

Is this a control issue do you think? He has little which is genuinely his so you moving stuff around feels like asserting dominance? Maybe.

Absolutely - from the outset I have thought he is trying to exert control over us and any given situation. He was on a week's respite care over the summer and the carer said exactly the same. However, he genuinely does have issues with things being touched, but it is normally just his very precious things (ie phone etc). We had an almighty explosion in Malaga airport a couple of weeks ago when a security guard touched his phone. Perhaps that experience has heightened his ability to cope with more 'minor' things.

Edit - I think I misread your sentiment. I think so anyway?

 His SW is utterly ^&$%ing useless though.

Escalate by whichever means you can, if you don't get any satisfaction, then raise through their hierarchy. They will 100% listen, and if they don't - keep going up. They may not tell you, but Foster Carers are so very valued...the cost of sending children in care to external placements (especially if they have complex needs) is astronomical.

If he doesn't like his things being touched, but you sometimes need to move them, a possible solution to this specific item is defining a clear place for him to store whatever stuff that is then always his little space. Gives you all control over what goes where.

Assuming He being trans was born as a female?
At age 12, the hormones he's experiencing may be royally messing with his already anxious brain and tipping him over the edge without him able to control. Is he on any meds to prevent the female (still working under said assumption) hormones developing further and giving him the female monthly week of stay the hell away?

If he doesn’t like his things being touched, but you sometimes need to move them, a possible solution to this specific item is defining a clear place for him to store whatever stuff that is then always his little space.

But in the past just moving his water bottle hasn't been an issue. I know not to touch more personal things like his phone. The other day I was bringing the washing in (including some of his clothes) and he was happy about that but then had a meltdown because someone touched his trainers that were drying on the same line (insert shrug emoji).

Assuming He being trans was born as a female?

This is correct – we refer to him in his preferred pronouns 😉 I have no idea how we managed to get through airport security with him being referred to by his birth name and having to deal with his passport showing his birth gender.

Is he on any meds to prevent the female hormones developing further

Nope - we are trying to make this work, but, as he won't interact with a professional, our options are limited – they can't possibly prescribe such meds without consultations taking place.

Edit – I think I misread your sentiment. I think so anyway?

I didn't mean him asserting control over you so much as over himself. You moving his stuff may be interpreted as you asserting control over him.

I didn’t mean him asserting control over you so much as over himself. You moving his stuff may be interpreted as you asserting control over him.

I get you - I guess there is a bit of both going on (in his head). He likes to have control (we all understand the boundaries). However the boundaries have suddenly changed in his head and, whilst he is living with us, he has to understand there are things that he cannot dictate the rules over - whether or not I am allowed to touch the bottle he chose to use (TBF, I hadn't even realised he had put it in there) - to me it was just a bottle in the fridge and I hadn't even twigged he had put it there!

So that's a thing. If the boundaries have changed then that's fine, but if he isn't communicating that to you then it's a fool's errand. You can't respect his wishes if he doesn't tell you what they are.

I don't know of course beyond what you post here, but that almost feels like he's deliberately setting you up to fail.

Another option is to try counselling for him ,  ideally using the Person Centred approach  rather than cbt and specialising in kids - which basically gives them a safe space to talk - or not about as much or as little as they want. It does take time to build up trust between the counsellor and the child to allow the child to open up.

I don’t know of course beyond what you post here, but that almost feels like he’s deliberately setting you up to fail.

A very interesting angle – he is very, very clever and very manipulative. When he saw the bottle had moved, he asked 'have you moved my bottle', to which I said 'yes, I moved a bottle from the inside door of the fridge as a shop is coming shortly and I am just sorting out the space we need for the milk that's coming on the shop'. It was only then that he blew up (ie, once he knew it was me that moved it). If he was genuinely distressed then surely he would have been upset as soon as he saw that it had moved, not when I confirmed that I had moved it.

Another option is to try counselling for him

As I have said earlier, this is not an option at the moment. When he came to us he was almost non-verbal, now he shouts (which is, I guess, progress as he is at least showing emotion). Perhaps somewhere down the line he will understand that he needs professional support but he's nowhere near that place yet.

First of all, don’t leap to a diagnosis of autism. All the behaviours you’ve described, in my very humble opinion, can be explained by factors such as anxiety and stress. That’s the conclusion I’ve reached with my daughter at least.

Now the more useful bit. A friend (no, really) also has problems with his son similar to those I’ve had with my daughter and you with your kid. He’s in Hampshire though, and has been lucky enough to get referred on to a PACE training program by his school. It’s all about equipping parents and carers with tools and techniques to deal with these kinds of behaviours. There no involvement expected of the kid themselves.

Are you in Hampshire, or does your local authority have any PACE courses?

He emailed me the leaflets and things he’d been given, pm me?

First of all, don’t leap to a diagnosis of autism. All the behaviours you’ve described, in my very humble opinion, can be explained by factors such as anxiety and stress.

This is very true and it is something his PIPA (Psychologically Informed Partnership Approach) Psychologist has suggested a few times, although some of his other behaviours do suggest autism – it's highly possible they are both factors. We have a PIPA meeting next week so I will try to remember to ask about PACE then - thank you.

A bit of an update (and something else that points to a potential control issue). Last week he cleaned a pair of trainers and hung them out on the washing line to dry. He saw me going near them when bringing some washing in and shouted at me not to touch them. At the weekend he had moved them and put them on the patio but I needed them moving. So, armed with recent experience, I asked him to move them. He just looked at me and said 'they are dirty, I am not touching them'.

Aaaand breathe...

Nothing useful to add other than the utmost respect. Oh and teenagers can be dicks irrespective of gender or neurodiversity.

Have you asked his teachers how he is in school ?
My 10 year old ( has autism) , behaves pretty well in school . However , this is due to spending most of the day “masking”. When he gets home , he can certainly “release” at the slightest thing.
It takes about 2-3 weeks of returning to school to get him back into the swing of things.
We’ve learnt over the years , just to sit back , let him get it out of his system. Sometimes he can go full on melt down. The dog , although not trained as an assistance dog as such, does a good job of calming him down in these situations

Nothing useful to add other than the utmost respect. Oh and teenagers can be dicks irrespective of gender or neurodiversity.

+1

Have you asked his teachers how he is in school ?

We have a meeting with them in the next few weeks. The last time we spoke, they said he is very good in school (generally, he had a few behaviour blips toward the end of the last term). We discussed the potential of autism and the safeguarding officer agreed that some of his behaviour suggests he is on the spectrum.

The dog , although not trained as an assistance dog as such, does a good job of calming him down in these situations

Same here, he loves our dog and she is usually his 'goto' when he is upset. Sometimes he'll just curl up in her basket (even if she's not there).

First of all, don’t leap to a diagnosis of autism. All the behaviours you’ve described, in my very humble opinion, can be explained by factors such as anxiety and stress. That’s the conclusion I’ve reached with my daughter at least.

I was about to suggest something similar.  Certainly if someone with autism behaved as you described it wouldn't be at all surprising, but a colleagues son has some pretty extreme issues which have been diagnosed with anxiety/OCD rather than autism.  Those include nobody else being allowed to touch his food, needing to sterilise everything etc (this pre-dates Covid).   Stressful or unusual situations aggravate it - does 12 = new school?    I don't have any solutions - but in your shoes I'd book an appointment with the GP and see them without your foster-son and see what solutions they might propose for a physician-phobic child!

Stressful or unusual situations aggravate it – does 12 = new school?

No - he's in his second year of secondary school now - he breezed into his first year and he is very confident and self-assured around his peers. I think any stress was possibly more connected to our recent trip abroad - it was his first time, we had a few challenges at times and he had to travel under his birth name/gender which will have been stressing him out.

<p>Haven’t read everything but while he has ASD character traits I would suggest that what he is possibly exhibiting is more in keeping with someone who is deprived (I am in no way suggesting you are depriving him, rather he suffered neglect as a young child). In either case routine and certainty is required. The Jelly Bean model is part of you understanding what he is experiencing in terms of stress. You can help him by being clear about what will happen (which it sounds as though you are doing). EG “David the security team will check your phone, they will give it back. Would you like me to hand it them or would you?”</p><p>ie this thing will happen, here are two ways it can happen. This builds agency and certainty.</p><p>Good luck.</p>

Another thing to consider is that Autism can present itself quiet differently in boys and girls - with girls often being able to mask / hide their autistic traits much better than boys and therefore go under the radar at school where they learn how to fit it - even though it takes a toll on their jelly bean count.

Good luck

As others have said, it an amazing thing you are doing!! I’ve just spoken to Mrs Sandboy who’s a Primary School Head with a lot of experience of the behaviour you are describing and she’s recommending having a look at this-

https://www.iriss.org.uk/resources/insights/trauma-sensitive-practice-children-care

She also said that play therapy is very effective in filling the missing bits of early development.

wishing you all the best with this.

Thanks for that Sandboy - some of it went a bit over my head on the first read but much of it resonated.

First hats off to you I have read a lot of your posts, and your attitude, patience and overall approach to what must be a very difficult situation is amazing.

we have an adult daughter with a ASD/ ADHD LD diagnosis with Challenging behaviours. In the 20 plus years since my daughter's diagnosis we have come into contact with many people with Autism and related conditions (FWOABW) but I wouldn't claim to be an expert as each individual can exhibit such a wide range of different traits and behaviours. We have also come into contact with hundreds of professionals, some have been amazing (and in our case life saving), and others not so much.

The only way I can describe the commonality I have observed in Autistic individuals is sensory responses to stimuli in the outside world which causes heightened anxiety and a feeling of lack of control. This results in individuals exhibiting ritualistic, repetitive, verbal or physical behaviours as a reaction to and often to try to control the environment or situation.

It's sometimes not easy for a parent or carer to say their child is manipulative or tries to be controlling. In our case it can certainly be true, but framed with the above sometimes the reasons behind it are evident.  Also with our daughter an inappropriate action can also be a cry for someone to take control from her, and she can often push boundaries with different individuals and situations to get a reaction and see where their/ the boundaries are.

Also to make matters more confusing, an individual's reaction can change depending on the environment. I have lost count of the number of times we have thought she won't be able to do that because of this but she does it, and the conversely she can have a full on meltdown over something we wouldn't have even thought of!

As others have said though, a lot of traits and behaviours that could be observed as Autistic can also occur in individuals that would not receive an autism diagnosis, or have other conditions or disorders (again FWOABW).

In the past we have found a multi agency (Parent/carers, Social services, Psychiatrist/ Mental health team and School) individual focussed approach with regular meetings and communication is the most effective framework for beneficial change (but that is largely dependant on the willingness of each agency to work together and funds/ budgets).

It could be worth watching 'Helping our teens' which is currently on iPlayer with Marie Gentles, a child behaviour expert - We think she is great and wished she could have helped during our daughters teenage years (think she also did a series called 'Don't exclude me' a few years back and brought out a book).

In hindsight I think there was times when I overreacted as a kid especially around puberty. I think you're right about the impending return to school adding to the stress. Not much to add, sorry. Other than I think you're doing a great job, total respect.

Not on topic I'm afraid but I was thinking of starting a 'Stuff that makes you disproportionately happy' thread and the depth of care shown by the folks on this thread would be right up on that list.

Firstly, you're an absolute hero for what you are doing.  From a limited perspective, the recent blow ups could be from 'masking' when on holiday and being back home he has felt safe enough to relax and let all the stress out, unfortunately on you. I get this fairly regularly.

I'm not sure you can do much to get a diagnosis without their buy in.  He sounds like he has a lot going on, but he's got you to look out for them which is the most important thing right now.

Tonight… his favourite meal (chicken fajitas which, incidentally, he shares from a big bowl which absolutely wouldn’t do with any other food). He wouldn’t eat the tortillas from a packet that was open because ‘they taste different because they are bigger’ (these are the tortillas he normally eats when making Quick Pizzas so he likes them). Cue a meltdown because he wanted to open a new packet of smaller ones so he ‘wouldn’t get full’. (I gave in tonight- it wasn’t worth the stress). Fun, fun, fun!

Yes we often have to choose our battles!

Try listening to peaceful parenting podcast. See if any of the ‘what’s the difference between’ podcasts resonate.