Trauma or Autism or neither.

[StrugglesSadness]

Firstly, I apologize for the length.

My son first started displaying worrying behaviour when he was 1.5. Flying into a rage & not being able to calm down for hours & hours. By 3, I asked for help, I did parenting courses & learned he suffers from anxiety.

Sister born.

Age 4 me & his dad split up. He was was still around a lot, we still had family days out. My son witnessed some shouting between us. It wasn't all harmonious.

By the age of 6 the behaviour had turned violent towards myself. I'm walking on eggshells. Anything sets him off. A Caff was opened. Anxiety was noted. Advice like 'Just walk away' leading me to wander around the house carrying my 2 year old, for hours. Exhausting myself & being attacked constantly from behind.

Covid. Home schooling, if my son can see the work there on the laptop, then he has to get it done. He won't have a break or rest if he can see work there.

Age 8 2nd Caff opened. This Support worker put all of the blame on myself & I agree. Support worker tells me not to cry in front of my son as it 'Makes him think that I am weak'. I am weak.

Behaviour is now absolutely horrendous. Leaving the home, extreme violence. Talks about wanting to kill himself. Gets hold of knives & uses anything he can as weapons. My heart is breaking for my son. Violence extends to his sister.

This lovely school worker mentions Autism & PDA. (She has left now. Beyond gutted) Maybe I can finally make things better for my son... Support worker is having none of it. Constantly tells me that meltdowns are happening because my son is 'Tired/hungry/bored/it's normal' Etc. Etc.

I complain to her manager & ask for the Caff to be closed if that's all the help she's going to be. Caff has been opened for a year & a half, we get a new support worker & keep it open.

New worker is on board with the 'Possible autism'. Tells me it's not my fault.
School is a bit... 'There's a few things going on but nothing of much concern, however, we are concerned re his behaviour at home. (Also, sister is crying in class & tells them that he hurts her)

so (almost done!) Here we are now. We are having family therapy sessions & the therapist has decided that my son is suffering from trauma due to his dad leaving, & that it's nothing like autism. He's dropped this bombshell on me.

I'm not sure where to go from here. When I google, there's clearly overlaps between autism/Trauma. How do I know which one it is? (If it's any) what do I do?

Obviously the thought of my son walking around traumatised is just horrendous. How can I help him? Surely if it's trauma then he needs counselling or something?

I know that nobody on here can actually tell me, I just feel so lost.

So the Christmas performance is done.

He was absolutely hyper this morning. Singing loudly, shouting random words like 'Bakery!' 'Petrol!' Taking a spoonful of cereal then charging round the room going 'Woooh!'. Then quietly saying 'Mum, I'm scared', then back to singing at the top of his voice, including the wrong words etc, jumping up & down during his breakfast, on/off/on/off his chair. Didn't know what to do with himself.

I left him for the most part but did tell him to finish his breakfast & then he could charge around the room/jump up & down.

After half an hour/40 mins of that, he got dressed & settled himself down doing some crafts in his room so I left him to it.

I promised him that it would be ok & sent him into school with a heavy feeling in my heart.

I've struggled today. I've been nauseous, headache, can't sit still myself. Sooo nervous about this performance.

I got the loveliest photo of him after. I've just looked at it on my phone & sobbed my heart out. It's like, underneath that smile he's in so much pain.

Bitter-sweet.

Sounds like you managed his pre-performance anxiety and the transition well.

Well done to both him for getting through it and you for supporting him.

Remember even though it was clearly hard for him, he did manage to do it and hopefully that will allow him to think positively about himself and this achievement.

My DS has now been removed from all rehearsals and Christmas performances now as he is not coping at all, coming out of school crying and screaming every day. Several changes of teaching and support staff in the last weeks of term have not helped. Had to speak to the Senco this week about it. We are hoping that they will get it sorted out for next term when he has a new class teacher starting.

Thank you Choconuttolata And what a nightmare for you! You poor son. I hope next term starts off positively & the staffing situation improves. It's so hard for the kids when the teachers keep changing isn't it. Hopefully the last few days will be a little easier for him.

My son isn't able to see the positives, he says the performance was worse than he expected it to be & today, he was stressed about doing 'Geography'. (It's almost like 'What's today's problem?')

I've just been outside trying to work out how to fix the back gates, can't work it out. (My son has done something to them when he got out) They are hanging open. The postman had placed a parcel through there which both made me laugh & also think 'FFS, people aren't supposed to be able to just walk in'.

I tried to talk to his dad about the last few weeks & what's going on with Barnardo's & he barely even responded.

Then he said 'I understand why parents walk away'. I just looked at him & he said 'I mean, I understand why parents decide that they've had enough & just leave'.

Right. So just dangle that in my face, that he might be about to walk away completely.

Positives. However we did it, the performance is done.
We have the standard counselling next week & a session for just me.

The counselor spoke to me alone for about 30 seconds & then he already knew everything that I was feeling pretty much! He said that I need an advocate in these school meetings as people aren't 'hearing' me.

He also has experience with Autism spectrum disorders (That's something the Stronger families therapist didn't have)

Bit of an update.

Family solutions is a bit Been there, done that. The worker is lovely though. She stayed for an hour & a half today, our longest session yet, & it was right at tea time (she said that she won't stay long)
My son was heightened & my daughter & him just bounced off each other, squabbled, cried, leaped all over the furniture & each other, flung toys at each other, completely blanked me & made it look as if I've never disciplined them in their lives.

Numerous times, the worker said 'Did you hear what mum just said?' Only to be ignored too.

I'm so embarrassed.

Counselling is still going well, we are doing the sessions with just me, although my son said that he will do one this week. Counsellor has already put in a recommendation that my son needs the NDD assessment.

Christmas was hell. Less said about that, the better.
When I spoke to the counsellor a few days later, he said that I looked 'Exhausted & sad'.
He asked what I feel, when things are really heightened? I said that I'm wishing to be anywhere else, & also wishing that somebody cares. He told me to flip that, & see that my son is feeling the same. Made me cry.

My son, before one of his meltdowns, had googled 'How do I know if I have autism?' On the iPad. My poor baby

He's coped really well with going back to school tbh. Instead of worrying about specific things, he's been generally 'Scared', & night times are quite emotional right now too, with him crying & saying that he's scared of monsters.

Hi op, actually, I think if your son is googling autism, it is such a positive- he may actually become a bit more aware of why he struggles and that it’s not his fault.

my 11 yo is also frequently scared at night. I sit with her to go to sleep. She is also very scared about school the next day. She started secondary school in Sept and made the adjustment better than expected, but it takes a shitload of extra support at home. I have a headstart of this because of my personal experience and my professional work - but it is a lot of extra effort!

I would focus my time on ensuring he is on the ND assessment waiting list. That’s a positive for having him start secondary. Progressing an EHCP request and beginning to enquire with school as to what extra support they have for students transitioning to secondary. You can look on your local offer (Google your LA and the words local offer - they should detail the extra support they have in place for SEN pupils).

Seriously, on the parenting aspect, don’t worry about judgement. It will always happen. All these ‘experts’ probably don’t parent an ND child. Take it from someone who has been judged many times!

Sorry I've not read all your posts. So apologies if I'm repeating here.

Have you requested ed psych go into school?

Is he under cahms?

Could you request paediatrician appointment?

Can gp refer to pathway ?

Has he been referred to a psychologist or psychiatrist?

You need to keep fighting up and not get bogged down with what the low level people are telling you. I'd do a lot of research on asd and PDA and parent accordingly anyway without diagnosis. It sounds like it would help. Also see if there are any support groups

Thank you autienotnaughty Yes I'm trying to follow PDA & Autism parenting.
We are doing counselling now, GP won't refer until this is finished (although I expect after this, they will decide not to for another reason)

He's not under Cahms as they said if he's under Barnardo's then it's the same sort of thing (although I am going to ring them the next time he's saying that he wants to die)

imip, I'm glad your daughter has managed the start to secondary reasonably well, that's lovely to hear!
I just hate the thought that he's struggling with these thoughts (about autism) & isn't able to talk to me about it.

Yes, I've read all of the transitioning to high school stuff. He gets extra settling in sessions because he's on the SEN register.

I havn't spoken to Social worker since 8th December (& she's not communicated with me) I'm just updating the counselor tbh, as he's the one who's pushing the ND assessment. She said we would only have 3-6 months support, in September, & that support has been ignoring me & refering us to 'Family solutions', which Barnardo's were going to do anyway.

The Family solutions worker asked if I'd ever thought of getting him assessed, like it's the first time it's ever occured to anybody.
If she decides to come at tea time again I'm just going to give them tea & hope it will go better than yesterday that way.

I'm just feeling frustrated as I think she's going to say that everything is a parenting issue, as the kids didn't listen to me at all, & that's going to set everything backwards when it was finally, with the help of the counselor, moving forwards.

I tried to call Cahms emergency line last night but it turned into a disaster. The call was 9 minutes (on my call log) & all the man on the other end did, was take my son's name, dob & then spend forever trying to find my 'Local' number to call. He kept saying 'Hold on, no that's not it, hold on'.

I just went with the 'Need emergency help' or whatever it says, Red tab on the website.

I then called the number that he had given me, & it's disconnected.

Later, during the 6 hour meltdown, I tried calling 111. This call was 16 minutes on hold but when the woman answered, my son, on the other side of the door, started furiously screaming & yanking on his bedroom door, slamming himself into it (furious that I was on the phone) I had to use 2 hands trying to hold the door shut as he was pulling it open trying to grab the phone.

The woman was saying 'I can't hear you' & I was saying 'Im here. Hello. I'm here' & she kept repeating 'I can't hear you'. & then she hung up.

So I gave up with that idea.

The meltdown carried on today & he ran from the house (luckily, to school)
The Senco simply said that the lesson that he said that he was upset about, didn't actually happen yesterday.

e counsellor, who was my favourite person in the whole world recently, has just dumped a whole load of judgemental crap onto my shoulders.

I read his texts in the queue at Aldi, which was a mistake as they've really upset me.

Basically saying that if I take the kids out more often then we wouldn't have any problems.

I just told him that nobody needs to worry about me being a crappy parent this weekend because they are with their dad tomorrow, being parented properly

So going to the park more often will prevent a six hour meltdown FFS! These people have no understanding of ASD clearly. They are also not factoring in that the lack of support means that you are exhausted.

I think you need to start making a record of contradictory statements and broken promises said/given by professionals in a timeline with a view to making a complaint about the total flip-flopping of advice and support.

I would also complete a diary of what happens with your DS and what he says day to day to try and spot the triggers.

Sounds like you deserve a weekend off to do something for yourself, hope you get some time to recharge.

Thank you for answering me Choconuttolata
He actually does have experience with ND & has been pushing his manager to get my son back on the assessment list, he said 'Sometimes parents come to me & suggest Autism & I think 'No way', but with you, I can absolutely see it. In everything that you tell me about your son, & in the way he is when I've spoken to him myself'.

He said that he was just trying to stop myself & my son from being in conflict, & to give his sister a break, by suggesting that I take them out more often. I said 'Ok but yesterday's meltdown started as soon as he woke up, what am I supposed to do, drag him out of the house at 6.30am in his P.J's?! & also, I take them out ALL the bloody time! We are barely 'in'! So yeah, that comment has touched a nerve.

He knows that we've had a rough week. He saw pictures of my bruises yesterday. I struggled to sleep last night as my arms are so tender I can't lay on either side.

I do/did keep a record but I don't keep it up as much as I used to tbh, as I just don't see the point.

Family Solutions are giving me pictures of faces with emotions on, for the kids to colour, like that's going to help.

Feeling a bit better about things today.

I read through all of the messages (& had a cry) last night, & had a nightmare about things, once I did manage to get to sleep.

I've got a super stressful week next week, I've got Family solutions X2, Social worker X1, school meeting X1 & counsellor on Friday (Just for me, he booked Friday as he knew what a stressful week I have)

SO. I have no space in my head for another judgemental twat, I'll give him the benefit of the doubt BUT I'm going to start Fridays video call very guarded, & hope for an apology.

The sessions are to find out what's going on for my son, of course, but the counsellor knows how much I'm struggling with my own M/H too, & says that the sessions are to help me talk things through, as much as they are for my son.

Currently laying in the bath, listening to music, eating sweets.

If I don't look at any part of my body, or touch the sides of the bath (& notice the bruises) then I can almost pretend I'm just a mum, having a bath. And I can almost put the thoughts of 'I can't do this' away, whilst they are with their dad today. Almost.

Family solutions & the counsellor are in agreement that he needs to be assessed, but for a 'Wider range of things'. Didn't get any clarity on what those are, as my son was listening.

I'm having the week from hell & hanging on by the smallest thread. Everything (not just with my son) is so difficult right now.

I'm not religious but heard that saying earlier 'God doesn't give us more than we can handle' I think it was. Well, in response to that, if he throws much more at me this week, then I'm not going to be able to handle it. Enough is enough

Anyway, my son did an emotional regulation assembly at school (all of them did it) & he came home & told me about how Green was the 'Everything's fine', then it was Yellow, Blue then Red. He said to me, with no prompting, that he lives his life at a Yellow at school, because he's sad, anxious & scared all of the time. I asked him if it's all of the time & he said 'All of the time at school'.

Then he said that he's a Blue or a Red at home, 90% of the time, because he's still scared, anxious & sad, but also angry & furious.

So proud of him. He's so brave telling me that.

That is zones of emotional regulation. It might be helpful for him to use it at home also. Might be a useful way for him deescalate in challenging circumstances?

I am sorry things are still difficult. All I can say is to remain determined that he needs an autism assessment and need La to be in front of the right people for it. He is not in front of the right people. By applying for an EHCP yourself, you are very likely to get in front of the right person. I know I bang on about this, but it is my day job and I know how the system (generally) works.

Thank you imip I've sent you a PM if that's ok.

Yes I'm going to ask for a copy from school. We've done similar things before but he seems to have taken to this one & as always, I'll try anything.

The other things that are going on, have had me asking their dad for help (& I only do that when I'm feeling absolutely desperate)

So having to communicate with him, & remain civil, as well as everybody else this week, is just too much for me.

It's only Tuesday & I'm all talked out.

My son is very heightened unfortunately tonight, after Family Solutions, but I think (hope) that I have avoided it escalating. He's absolutely terrified about school tomorrow. (Change of lesson)

Yes sounds like they are using the Zones of Regulation which I posted about previously. My son uses them a lot at school to help him manage his emotions and tell staff when he needs a time out break to calm down or needs help to manage his stress around work tasks.

This could be a positive thing for your son if he learns to use this to explain how he is feeling, but it needs a strategy i.e. when I feel X colour I need to go for a time out, what helps me when I feel X colour is <insert helpful thing>. I can do X thing on my time out to help me calm down.

It help your son to feel more in control at those times if you have a discussion with him about what he feels would help him so he is choosing the strategy that helps him calm. Sometimes it is good to have some toys that only come out at that time so they become associated with calming down.

This is not a red zone strategy, more an early intervention if he notices he is getting stressed. Yellow zone, Blue zone. At red he will be too far gone as you know.

My son's things at school are sitting in the book corner quietly either looking at a book or doing a small Lego model. Sometimes it will be to go outside the classroom for 5 minutes or outside into the playground for 10 minutes to walk with a teacher. At home he goes to his room and plays Lego when heightened or sits in our bed and watches TV/tablet to calm down.

Thank you Choconuttolata. I should have thought to ask the school to do it before, as when we did similar with Support worker & Stronger families, they just had no impact at all, but if course, coming from the school, my son has actually taken notice.

I try to have these conversations & he does know what helps him to calm down, sometimes he will say but more often than not he just says that he doesn't know. But unfortunately the thing that helps the most (reading wrapped in a blanket) usually gets used as weapons against me. So he will be hurling all his books & blankets at me in a rage.

He's much more able to talk about his feelings than he was, but it's still extremely difficult to have those conversations.

At school, he's currently sitting alone (through choice) & I think that says a lot.

Last night was ok but he's gone to school full of fear today. Terrified that he's going to 'die'. He managed well this morning, keeping busy, but he was clinging to me the whole way in, asking me to give him luck so that he can stay alive.

I mentioned it to this other parent & she said 'All because of a change of lesson? However will he manage at high school?' I said 'Well he probably won't, will he, that's why I'm trying to sort stuff out before then. It's not easy when I'm getting blocked at every single turn though.'

EHCP application is done.

School meeting tomorrow then counsellor Friday.

Social worker won't take those notes off my son's record, about us finishing stronger families early. She said 'We spoke about this last time'. I said 'I know, & then I sent you all our WhatsApp conversations to show that it was definitely him cancelling on his side, & you said you'd emailed him, but you've just decided to leave it on our notes after doing all of that?' She said 'Yes because if people just ask you, then you can explain that it was him cancelling & not you'.

Our half an hour 'Catch up' meeting was 4 minutes. I said that I had nothing to say to her. I have to see her tomorrow & she's not done a single thing that I asked her to do in the last meeting, in September.

My son often expresses fear around death and dying, I think it is part of the developmental stage he is at currently. It was also magnified by his Dad going into hospital with Covid pneumonia 3 years ago.

It has been found that autistic children have differences in the development of the amygdala and the 32 regions of the brain that connect to the amygdala are larger. The amygdala is a part of the brain involved in processing fear and other emotions.

https://www.spectrumnews.org/news/amygdala-linked-brain-areas-grow-differently-in-autism/

https://www.theyarethefuture.co.uk/death-anxiety-children/

On the social worker front I think you may have to write a written complaint so I would start making notes on a timeline of things that haven't been done to get it fresh in your mind. A 4 minute catch up instead of 30 minutes just indicates how little she cares.

Thank you Choconuttolata, I'll have a look. Family solutions asked me about him talking about death & I said 'I think it's partly age, they are doing history at school etc they are fascinated by death at this age, & also it's probably part of his anxiety in general, surely? He's scared, scared a lot of the time'

(They ask me questions that I think they should know the answers too!)

I honestly can't be bothered to make a complaint about the social worker. She said 3-6 months for the CIN plan, at the start of September, so surely it should be done soon. This was the third catch-up we've had & each time she just listens to me then ends it, she never has anything much to say.

So this time, she asked what's going on for my son recently. I said 'Well he's been holding it all in since school went back, & now it's all coming out, in my opinion. What do you think?' I got an 'Uh-huh' to that. Then 'Anything you need to ask?' So I asked about stronger families being taken off our file & she said there's no need. She asked if I had anything else to ask so I just said no.

She told me to take my notebook to the school meeting, with my list, because that works well. Then ended the call.

I thought to myself 'Why bother? School will say there's nothing more they can do. You will do nothing. EHCP plan will be laughed off & refused, nobody will offer to help me with the ND assessment paperwork, their dad will sit there pretending he's a perfect parent, end meeting'.

That article was fascinating, Choconuttolata really interesting, thank you.

School meeting. Well, they didn't like it when I said 'I've done the EHCP myself, even though you said that there's no point & you won't help me'. They said that it's a massive form & it's all education based. I don't care how big the form is, tbh. Not my problem.

Social worker previously said she can't help me with the ND form, then she said that she will help me 'After Christmas', & now she's saying that she can't help me & can I ask the counsellor. I mean, I'll ask him, but I'm not sure about that as he's never 'met' my son. Would that be allowed?

Not sure it's really my place to ask him either. Surely the Social worker could just email him & ask him? (But no, that would involve her actually 'doing' something)

School said that they 'Aren't allowed' to fill in the professional side of the form, if it's already been refused once. I said 'Thats fine, I didn't expect you to'. (I don't expect them to help with anything anymore)

Their dad is feeling utterly frustrated. He said 'Honestly, I've only been to 2 of these meetings, I don't know how you can keep doing this. How long have you been trying to get this ND assessment done now? You are fighting & trying every avenue, & at every turn, they are just shutting you down. Everything you ask, is a 'No'. I said 'Times that by 1000%, then you will be nearly at my frustration level'.

His dad did make some comments about how my son does things 'Just to get his own way' & I cut him off & said that isn't true. Normal sibling crap, sure, but he's not saying that he's scared about a lesson or whatever, to get his own way.

The whole thing was a complete & utter waste of time like usual. I'm glad it's done though. Deep breath. Counselling session with just me tomorrow.

Counsellor started today's session with an apology & really laboured the point that he doesn't think everything will be magically fixed (my words on our texts) if I take my son out more, it was just his suggestion for that weekend but it was clumsily worded. The last thing that he wants our sessions/texts to be upsetting for me, as I have enough upset already.

I'm happy with that. I need him in my corner.

So, he's told me his thoughts so far & they are that my son is Autistic & the reasons why. He's sent me this via email So I can get started with the new ND form now & he can be my 'Professional'. He said that he's happy to do this.

He said that Family solutions told him they 'Don't see it' (Any ND) I said 'But they asked me if I'd ever thought of getting his assessed so I must have said or she must have seen something to make her ask that!'

He said he's starting to see things from my side, that we have all these people working with us but they just aren't seeing it.

We spoke about Stronger families & how he was convinced it was trauma, & I told him (what I've been told on here) about how children with unmanaged ND needs will be suffering from trauma & he completely agreed with me & said that's absolutely what's going on for my son.

He gave a really good example of how my son was (possibly) feeling & struggling with things already, when he was little, & then me & his dad split up & that sent his world into chaos. Makes perfect sense to me, & it's so nice to hear somebody say that my son had problems already, instead of saying that everything started when me & his dad split up.

We talked through the school meeting & things with his dad. He said that I need to try & hold on to the actions instead of the words with the school, so they might sit there & say that 'Everythings fine' but they are raising Safeguarding referrals & they helped me with the ND form (& suggested Autism in the first place)

That makes sense.

I'm exhausted. This week has been so hard.

The other things that have been hard, aren't sorted, but his dad is dealing with it, keeping it from me a bit as he knows I can't manage it right now. He told me that 'Everything will be ok'. (A rare moment of kindness)

Really glad your counsellor apologised and will be able to help with the forms, that is good news.

Also glad to hear that his Dad is starting to be more supportive and involved.

Small steps, but going in the right direction.

Also had some positives here this week as managed to get sons school Head and Senco onside with back up planning for last minute staffing changes to help minimise my son's distress levels. They agreed if his 1:1 is off he will have a member of staff he knows with him instead, he has been scared to go to school after all the last minute changes of staff last term.

Thank you Choconuttolata For your kindness, as ever.

I'm glad to hear you've made some progress. That seems like a basic thing doesn't it, the back up plan, but hopefully it will make things a lot better for your son. Nothings going to be ok if he's scared to go to school, is it.

My little one was having an epic tantrum in the middle of the park today, this woman came over & rubbed my arm & said 'You've got this'. I never get that, nobody ever comes & says anything nice like that, they just stare usually.

His dad works in the area, of the thing he's helping with, so it would be a whole new level of crap, if he refused to help me with this.

But still, yes, I'll take that bit of kindness, & the counsellors apology, & the random woman just now, I'm on a roll!

(Not feeling very positive but there you go, I keep running the negative comments from the school, through my head & feeling like I'm failing)

I'll make a start on the form tomorrow hopefully.

I'm struggling a bit with these 2 questions.

'What benefits do you feel you child would gain from a specialist autism assessment?'

&

'Why do you feel you child requires an assessment for autism?'

I feel like I know the answers to these but I keep writing things & thinking 'That goes in the other box' or 'That isn't what they are asking'.

So far I've got 'I believe my son has always been showing signs of autism but they have been dismissed as 'Terrible Twos' then 'Anxiety' & now he masks at school'.

'If we could have a Yes or a No then the we could no longer have this What if hanging over our heads & it will help my son to understand a little bit what is going on in his mind, & also that his behaviour isn't 'wrong' when we are around others (if it's a yes) & if it's a no then I can focus all of my efforts on to what else is going on'

What else do I need?

It is a fact that autism that is not recognised can lead to very poor mental health outcomes. So, you are trying to ensure that he has good mental health. It would be helpful for him to be proud of his autism rather than ashamed. It will help him learn more about himself. It will help school staff understand his challenges better. He will be legally recognised as having a disability and will be afforded reasonable adjustments under the equality act. You don’t view it as a ‘label’ but as a means of understanding why he is struggling.

also, school provide a lot of support - no one has thought to question why? You have a number of professionals working alongside your family. No one is keen to explore the root cause of this?

epilepsy and suicide are the two leading deaths is autistic people. You might not always be able to help epilepsy, but suicide?

employment outcomes are also typically very poor for autistic people. You want your son to learn, work, have economic independence and contribute to society - to ensure the best chances for this, an assessment is essential.