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.

Thank you so much for that imip Thats all really helpful.

The social workers assessment says something about all this support but still no further forward. I asked her about it but she just skirted around it. I'm sure Stronger Families said something like that too, but neither of them think it's ND.

I was going to find the old assessment & see what I wrote on there but this assessment feels about 1000 miles away from where we were when I wrote that one. It's very difficult to fill in.

Adapted this from a ASD support site, might be helpful as a template to word in a more personal way and make specific examples.

Reasons that people can feel that seeking a diagnosis can be helpful:

• To give you a better understanding regarding behaviour, strengths and needs, and appropriate support.

• To help explain the reason why a child / young person always felt different, therefore increasing their own confidence and understanding of themselves.

If he does receive a diagnosis this could prevent mental distress as he develops, and can stop further psychiatric illnesses developing due to more appropriate support and reasonable adjustments being put in place.

• Help you as a parent feel more able to cope with other people's reactions to their child and lead to a greater sense of confidence in supporting him.

• Give you the parents and your son a clear and realistic sense of the limitations and challenges he child may face as a result.

• Help schools find more specific information to give them a better understanding of a child’s strengths and difficulties. Especially important as he is transferring to secondary soon.

I would also add that he has responded positively to some strategies used for children with ASD e.g support for transition into school, zones of regulation, quiet space at home, sensory toys, add any other things you do around clear communication.

You could have a look at the Bristol SEND primary toolkit for ASD which lists lots of examples of adjustments and see what you do at home in each category. Some of the examples of communication for example might be the same.

https://www.bristol.gov.uk/bristol-local-offer/professionals/school-age/send-autism-support-documents

They have to consider the benefits vs the negatives

Worst case scenario, it all comes to nothing and your child comes out the other end with no diagnosis. The argument they need to see is positives for him and your family of a diagnosis are so much greater.

Thank you both so much. I really appreciate it.

I'm about 80% done. It's slightly slower as I'm having to do it on my tablet & it keeps freezing, sending me to the top then back to the bottom etc (I'm longing for a pen & paper!) But I will get there.

I think you need to be much more specific.
He is always anxious about dying and has black and white thinking that you hope a diagnosis would help him to understand.
Etc. If you can get anyone professional to look over it that would help or use examples from online exemplars adjusted to be specific.
Like in job applications you have to explain how and why your experience links to the role to get shortlisted, here you do the same.

Thank you Boomboom22 Yes I've mentioned both of those things. I worry that I'm writing too much but I think it's better to write too much than not enough.

There isn't really anybody to look it over for me, the counsellor is writing the professional side but he's never done that before & is learning the process as we go.

https://faithmummy.wordpress.com/2016/09/08/three-things-that-happen-when-your-autistic-child-is-different-at-home-and-at-school/

https://www.autism.org.uk/advice-and-guidance/topics/education/different-behaviour-between-school-and-home/parents-and-carers

https://www.jodiesmitten.co.uk/2022/01/18/should-guidelines-on-identifying-masking-in-autistic-children-be-incorporated-into-the-national-institute-for-health-and-care-excellence-nice-guidelines/

I found these articles and thought they might be useful to help illustrate the link between your son's behaviour at home and his distress and masking at school.

Thank you Choconuttolata, It's like reading my own story there.

I think I'm finally done! Just feels like I could go on forever, I keep thinking 'Ooh, I should add this!'
I know we had an application before, just with the mess Barnardo's have made of everything else, I'm not expecting them to link the Two.

Counsellor said he will read through it all for me & even though he's never done one of these before, he will let me know if there's anything obvious that he thinks I should add.

I asked the Social worker if she can send over the last 2 police reports, just to add them on, & I also asked if she could write a report too. This was last Thursday &, as usual, I've not had a response.

So I've asked Family solutions if they can do one & she said that I should ask the Social worker really.

I asked the kids separately & they both say the social worker hasn't seen them since early December. Is that normal?
Really don't see what her role in this is, at all now. I didn't think she'd seen them but just checked with the kids out of curiousity really!

Anyway, with the NDD paperwork at least, everything is heading in the right direction!

We are having a horrendous week. Really, really difficult. Meltdowns Sunday night, Monday morning, Monday night, Tuesday morning. (Last night, just a Mini-meltdown)

Yesterday, I got back from the school run, I can barely walk as everything is aching so badly. I messaged/emailed everybody & told them what's happening, & how much we struggling (& I was ignored by everybody apart from the counsellor, who told me to see things from my son's perspective)

I am seeing things from my son's perspective. Everything is difficult for him. Everything. Mentally, every single day is a struggle. I know this & I'm using every second of my mental energy to try & make it better.

Just once, I want somebody to ask me if I am ok. I managed to get myself trapped in my son's bedroom yesterday morning, with him slamming the door on my arm/hand as I tried to open it, & kicking the crap out of my stomach. He also dragged me from the door by my hair.

That's a frightening situation to be in. It's not 'In a room with your son'. It's 'In a room with a child who is extremely heightened mentally & is channeling all of their anger into hurting you physically. You aren't his mum, just an object to be beaten'.

But I'm clearly asking too much for somebody to care that I'm so battered & bruised & then have the mental load to carry as well. And I'm happy to carry the mental load. I will do it until I die (Soon, hopefully) as that's what my son needs. And I love my son.

I just wanted somebody to care about me, as well as him. I could matter as well as my son, couldn't I? No.

I told the counsellor that I make no secret to anybody, that I struggle with my own MH, but that I know I'm not important.

Silence, from everybody.

Very difficult. I am sorry to hear this. There is a lady on social media who does a lot of work with families of children with challenging behaviour - I think her name is Yvonne Newbold - might be worth checking out. I think at the very least knowing you’re not alone would be helpful.

Thank you for answering me imip I've saved the page to read later.

Maybe there's something wrong with me because it upsets me so much when everybody ignores me. I feel like, how hard is it to reply with 'I hope you are ok, I will be in touch soon'. Instead of... Nothing... Or... Think of your son...

I don't know why, if I say 'I'm sore physically today, but I know that things are awful for my son too', the only response to that, is 'Think of your son'.

I just don't matter.

If it’s any constellation - you are not alone. There are lots of parents like you struggling day to day. Many don’t even have the ‘respite’ of their children being in school as they have been out of school for years. No one cares. Social care will be focussed on their statutory work. Know this - they are not supporting you because they know that you are a good parent who cares for your child - no matter what it may seem. If they thought you were a ‘bad’ parent, they would be there!

Thank you imip. That makes sense about SS. Reading that helps a lot actually.

I can't even imagine not having those few school hours as well as all this.

Family solutions are supposed to be talking to school about my son's homework situation. I told her that I'd emailed the Senco about it, & been ignored, & that I bought it up in the school meeting, & she just started going on about how will he manage in high school.

People keep throwing this question at me lately, 'How will he manage in high school?' Like, if there's some miracle fix between now & September then won't somebody tell me? Because otherwise, the simple answer is... 'He won't'.

Reverse that question onto them - yes, how will he manage at high school - what can you do to help?

Thank you imip. I answered the Senco with 'Well hopefully an EHCP will help with things like this, & anyway he's not at high school yet & we are having problems with the homework here, now' and then that's about as much as I could argue, she answered 'Yes, I understand that'. And that was it.

I've been watching Yvonne's videos. They are a nice thing to see today. I always think that I'm not on FB or any Social media other than here but I realised that I have an Instagram account (just for following celebrities so I forget about it!) So I've followed her on there as well.

So mini update for today. I've heard from Family Solutions & she is speaking to the Social worker & asking if they can get me some of my own counselling. She's going to ask about a statement for the NDD assessment as I've not had a response.
She said she understands why the counsellor said what he did yesterday but that I am still a person & not just mum, & that the counsellor should have understood that I was reaching out for support & that I'm allowed to do that, since he is working with 'Our family' & not just my son.

I've messaged the counsellor & tod him I don't want to do our video call tomorrow. I just feel like, if he isn't on my side right now then I can't face seeing him. I'm feeling too fragile. I'm barely hanging on (& I'm not saying that just to be dramatic) I don't need to keep being reminded to think of my son when that is all that I am doing.

I told him that he can email or text me. I'm not cutting contact (as that won't be helpful to my son) I just don't want the video calls.

Gah. Counsellor has said it's best for us to do the video calls as it's 'Emotionally charged stuff'. No shit.

He also said that he doesn't want me to feel like my feelings don't matter, so I just said that I will do the session tomorrow if that's what he wants but he made it perfectly clear yesterday that my feelings don't matter, so I don't wish to discuss that. So I will meet with him tomorrow to only discuss the NDD form.

We are home from school & all is well, for now.

just read through the last few months of updates and I'm struck by how much inefficient action there is amongst professionals, such little meaningful and slow help, people dragging their heels. Also a school with poor understanding of autism/pda, a school very rigid and unable to make easy small adaptions to meet his needs (a book after an exam, no homework).

Everything you write says PDA autism to me. The anxiety linked to control is evident.

You’ve hit crisis point and must present yourself at a&e if feeling suicidal. Sadly i don’t think you’ll get any real immediate help while you seem to be coping. We have had our own family issues (similar but different) and I’ve been told crisis point A&E is likely to result in some intervention/support but otherwise there is very little, just crumbs off the bird table.

I wondered why you are anti medication? Medication for your son is likely to lessen anxiety, increase engagement, decrease heightened behaviour, ease relationships, help him settle in green and yellow. For the heightened behaviour (blue and red) PRN medication may be the way forward. He is getting bigger and stronger, it’s worrying if fractured skull and broken bones are next, a serious risk to you and your daughter.

I suspect a SEN residential educational provision potentially might offer a good balance for you all, safeguarding you and your DD, with a specialist team actively supporting your child, therapeutic understanding environment, weekends or holidays at home?

also I wanted to add that you sound like an amazing parent, very loving and supportive, desperately trying to do your best in very difficult circumstances.

Thank you Hearti For taking the time to answer me. And thank you for the kind words. They mean a lot.
I feel like this thread is just full of me complaining but the kind words do help.

Tuesday, I didn't feel like I could go on. I was thinking about very dark things. Struggling not to act on these thoughts if I'm honest. I made a plan... I have weird snippets of memory for that day, like I was there but not there.

Today, I'm not sure if the counsellor wants to go through my answers on the NDD form, with me or write his part, with me, as his message wasn't clear yesterday. But it will be one step forwards anyway.

People used to tell me to ask SS & then we will get some proper help. But they've done nothing.

My son came back from his dad's in a seemingly happy mood today, but one little (to us) thing sent him into a huge spiral of sadness & negativity, with all these worries for the day ahead, & now he's gone into school very unhappy. I was trying to explain to his dad how he might seem like he's ok but he has everything going on in his head & he is exhausted mentally from that.

His dad is defending the school, saying that it's difficult to answer emails etc. I don't care how difficult it is, I mentioned homework in the school meeting & in 2 emails this week. I mentioned another specific thing & asked for an answer, on Monday, & all I've had is general 'The children are fine' emails.

I'm not anti medication, I didn't mean that, I just didn't want people to think that I think that it's a quick fix, when I don't, my mum used to say things like 'Get him on some medication, my friend's son is a bit ADHD & meds fixed that' Like it would fix everything instantly.

If medication is the way to go, included with other things that will help us, then I'm all for it.

On the NDD form, Writing down ALL of the help that we've had, & the outcome of all of that, has been we are in the worst place we've ever been, & now we have High school looming over us, it's just so upsetting. And makes me so angry, but I don't know how to make people listen.

Hearti Family Solutions mentioned holidays & I said that after I took them to the seaside & that night in the hotel turned into a disaster, I wondered if there's anywhere kind of 'Autism friendly' & she said that she knows some places & will look into it for me.

At the school meeting, the Social worker said that she can't be the lead professional on the NDD form, & to ask the Therapist. Therapist said that he would so I've sent my form to him & was waiting for him to write the professional side.

He's now decided that he's not actually going to be the lead professional as he doesn't live in our area so it will be better coming from the Social worker.

I don't know what to do.

If you have another day like Tuesday where you’re fighting inwardly not to end things, please please please take yourself off to A&E and tell them. Presently the focus is all on the kids, however your well-being is completely critical and central in all this and you (like any other human) cannot be a bottomless pit of strength.

You're right about medication, while ADHD meds can be a quicker fix for people with ADHD, medication for autism can be tricky in the early days, with difficult side effects and sometimes the need for multiple medication reviews to refine.

Going back to homework, personally I’d inform the school that he will no longer be doing schoolwork at home due to it being a trigger which creates dangerous safeguarding issues and physical injury for the wider family. The school can like it or lump your decision. Any school with an ounce of compassion, secondary or primary, would understand that the risks and fallout of being heightened over homework outweigh the benefit of actually completing homework.

The move to secondary school can be tricky for ND people (we found this) so getting an EHCP in place before starting will hopefully help.

I have no idea how you’ve managed so long with so little help.

Can you ask that he remains lead despite being out of area?

Also what reason did the social worker give for not being lead?

It’s like swimming in treacle!

Hearti I'm struggling so much not to spiral myself right now... I feel like I can't breathe

He didn't mention it until we were nearly at the end of the video call, I said that as the lead professional, he has to send everything on for me, then he said he's not going to be the lead because it won't carry any weight as he's out of area. I just kind of said 'Oh. But I thought that you were?' & he said that I should ask the Social worker or Family solutions, as they are easily contactable in our area... I mean, he can be contacted by email or phone or text? & as for the Social worker being easily contactable, well! In theory maybe.

He's going to contact Family solutions & ask her to do it. I'm not sure how that's going to go, as she just told me on Monday that having the therapist down as the lead professional will carry a lot of weight...

Social worker just said that she 'Cant' do it, before.

I've emailed Family Solutions & the Social worker (5 with no reply before today) titled IMPORTANT & asked what can I do?

I've also tried to ask the GP to do it but when I was filling in the online appointment form & said that my son is violent towards me, the screen went Red & it said they can't finish the consultation & I should call them or ring the Samaritans.

I might call them. I can't string a sentence together right now.

Before all of this, the therapist bought up why I feel like my feelings don't matter, so I told him & he was full of apologies, I told him that I don't need apologies, I'm done hoping that somebody might care about my feelings just a little, I told him that 'They tell you to reach out, when you feel like you can't manage, & when I do reach out, I am dismissed'. He tried to talk some more about that & I just repeated that I didn't want to talk about it.

I managed to hold it together though, I didn't cry. (I am now)

https://www.samaritans.org/

Samaritans, a good idea but please do access A&E if things get really desperate. If you’re child free is it possible to go for a walk, meditate, have a long bath, watch a comedy or read a book, although these seem like such small fry in the face of such complex stress.