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.

This is what I feared op. Great advice above. Make a list of ND traits and go to your GP for referral. Complain to PALS also (I assume that is how it would work with Barnardos also, but better yet ask them for a copy of their complaints policy and follow it - they must have one.

I haven’t read this in full, but has this been followed? https://infolink.suffolk.gov.uk/kb5/suffolk/infolink/advice.page?id=vuyrPmzW-Tw

I usually advise people to look up the DSM 5 and use it to map their own child’s behaviours according to the triad of impairments - a PP has done that for you above. I would talk about him to professionals as if he is autistic and parent him as if he is autistic.

Have school asked for advice from these guys? https://infolink.suffolk.gov.uk/kb5/suffolk/infolink/advice.page?id=la6i2-nerAE

I am sorry sendias haven’t been helpful, you could consider complaining. They have drop ins, you could attend these to see if you can get better support https://suffolksendiass.co.uk/ this may be helpful https://m.youtube.com/watch?v=QVW3SDXtELo

Remember that you son masks, he is unable to cope with the pressure of masking during the school day and he experiences a very high level of emotional dystrgulation at home. You feel that he needs a full statutory assessment to determine the full extent of his needs. You are fearful that he will not manage the upcoming transition into secondary and that his behaviour at home will also begin in school.

I knew he wasn’t on the list. I always advise parents now to establish and monitor where they are on the list. 10 years ago, my daughter couldn’t even get on the list. She was like your son. Today she has a diagnosis, an EHCP and is doing her GCSEs - this was unimaginable. It took her trying to cut herself with a knife at aged six to be taken seriously. I am not going to say it will be an easy journey, but it is easier when you arm yourself with information and go in to ‘battle’. Btw, she never really got much support via her EHCP but the fact that she had it meant that it was recognised that she masked at school and we copped it at home at night so the day was made ‘easier’ for her.

imip Do you realise how heartbreaking it is for a stranger on the internet to tell me that they 'Knew my son wasn't on the list', when I didn't know that myself?

I'm that much of a shitty parent that I believed that after we sent all of the other evidence, that he was just waiting his turn on the list like he should be? The support worker believed it, the social worker believed it, the school believed it, But you knew different

I feel like my whole world is falling apart here

Oh Struggles, I know it is hard. Barnado's have been crap at communicating with you and I am sure everyone else like you thought he was on the list. Speak to the school, the SENCO needs to know what Barnado's have said. Also speak to your GP.

The reason I told you to do a GDPR request was so that you have all the information from all parties about what has been said, so that you can use it to pull out information about autistic traits and also to help you do another referral maybe via the GP/MP, it would be easier to do one subject access request to Barnado's than to all the different parties to get that information.

It will help you as well once he switches schools because you will have the information for the new SENCO. I did this when my DD was referred because the waiting list was so long she had moved up to Secondary before she was assessed. I was able to use it to push the school to re-refer when she declined the diagnosis at the first assessment and then changed her mind later. I had all of the evidence of behaviours that her primary school had observed as well as my own forms from that time to support me.

I work with parents in your situation, so I guess it is more ‘insider knowledge’.

based on your daughter’s disclosure yesterday at school, I feel they should be making a safeguarding referral.

I agree with the SAR also under gdpr

“I know you are all trying to help but everybody now coming on & telling me that school think I'm lying & or exaggerating or that somewhere on my son's papers, people have written that I'm a liar, isn't helping my own MH.

I know I'm not dealing with things as fast as you all would, but I'm doing my best.”

Hi Struggles, I want to reassure you that no one talking to you on this thread thinks you are lying or exaggerating. We all understand how dire things are for you which is why we’ve stuck with you.

There are a couple of posters here Imip etc who know their stuff with Autism and are suggesting ways to get help for your son, which you clearly need. You did well to call Bernardo’s the other day. Read the suggestions and break it down into manageable tasks - 1 a day or whatever works for you. First task is to define his autistic traits.

I also have no family support, friends who don’t really get what we’ve been through, a husband who leaves it all to me because I had to give up career to be my DD’s carer so it’s now ‘my job’ and the services that we use to help have been very hard wins for me. Believe me I know how hard this is. You find the strength because you have to.

We believe you. Its just clear the school are not helping and it sounds like they just say to everyone they see no signs of autism at all when your posts scream pda or autism of some sort.

Hi Struggles, I hope you are ok. I feel perhaps I made you sadder knowing your child may not be on the list. I see this a lot because it is part of my work and in now way a reflection on your parenting. Believe me, I have been there but 10 years on have the benefit of all my experience. You are stronger than you realise x

No way, not now way!

Hi imip and everybody else. Thank you for the supportive posts. It's kind of you.
I believe this has been a supportive thread in general so thank you all.

I didn't feel like posting yesterday. I'm feeling upset that I'm being told by posters on here, that people obviously don't believe me, in RL, & that people know better than me, but I also understand it's the internet of course & anybody can have an opinion.

So I suppose the updates are -

We had a neighbour shout 'Shut the fuck up' the other night when my son was screaming at his window (6pm not that that means it's ok just that it wasn't late) (can't work out which neighbour but it's made me feel very uneasy & added another level of worry)

When my daughter tells school that she has been hurt, they submit a safeguarding referral. Just nothing seems to be being done off the back of this.

I spoke to the Senco & she said we need to see what SS suggest now re the ND referal. She said everything is still kind of on hold until SS come up with a further plan.

I made a complaint to Barnardo's.

I submitted a SAR request to Barnardo's & Emotional wellbeing.

I've had no response from the Social worker to my missed call/voice message re the ND referal, or my email, both sent on Wednesday, or my further email on Thursday detailing my son's epic meltdown that morning.

I started a list of reasons why I believe it may be Autism, based on the list on the NHS & the posters help above, but I did struggle with this as I'm not sure what to do with it, if CAHMS aren't taking on new cases, GP always just say my son is fine & Barnardo's won't put him on the list.

I had the heating people come & look at the kids bedroom radiator... Turns out the thermostat bit had been, most likely kicked in temper, out of place, not so that you could obviously see it, & that's why it's not heating up.

My son was very upset on Thursday morning, hitting & screaming at me all the way to school, so we had to have his LSA come to the office & talk him through everything that he was worrying about for that day & tell him the solutions so that he was able to go in (school will still count this as him being 'fine' though)

I'd never met this LSA & she was very lovely, very good with him. Knew just what to say. Put my mind at ease.

His teacher has also complained to the office about my kids being marked as 'Unauthorised' on the 2 mornings when we were half an hour late, I emailed beforehand both times, it actually says on my daughter's file 'Brother was hurting her so it wasn't safe to leave' & we were unauthorised for that! I only found that out on parents eve & complained to his teacher then so the office called me & have taken the 'Unauthorised' off their files.

Little thing but nice to know that I was listened to by his teacher.

I had a long chat with a nice woman from emotional well-being, she's completely confused why Barnardo's won't put him on the list, I forwarded the email to her & am waiting to hear. She said there's clearly Mental health struggles for my son & I agreed. She asked if there's been any trauma, I said that Stronger families were querying this & the only thing that happened was me & his dad split & he witnessed some shouting (I'm always honest about that) but I also made it clear that this flying into a rage & being unable to calm down, started years before me & his dad split.

There is 'proof' of this I guess, as I first attended a parenting course & asked for help with my son, when me & his dad were still together.

My son had a 2nd appointment out of school, I took him for cake after & he said 'Its not these certain things that I get scared about, it's just the changes to my normal day, that I don't like'. Soooo proud of him for that. He's so amazing. I love him so much. Heart bursting moment for me. He never opens up like that.

I told him I'm proud of him for saying & knowing that, but didn't make a big deal about it as he doesn't like the fuss & it makes him shut down.

Me, I've had lots of tears, no time to decompress, feel like I'm lurching from one awful moment to another, struggling to see the good, but I can see it, as I've written some good things above, just the negative are overshadowing the good right now.

I didn't manage to contact the GP. I have other health things going on too & they have messed up my prescription so I need to speak to them, it just seems a bit too 'big' of an ask, of me, right now, when all of my fight is going on making things better for my kids.

Hi Struggles, good to hear from you. Sounds like you’ve been busy, it’s exhausting, but I hope it all pays off. 🤞

Hold onto those good things and keep us posted. If you need help with your autistic traits list, I’m sure one of the wise women oh here (not me!) would be able to help if you feel comfortable posting the list you’ve started.

I hope you get a little quiet time to yourself this weekend. Take care.

OP, I'm going to ask you a crucial question...

Did your son ever have strep throat?

Reason I say that is it sounds a lot like PANDAS

Thank you CowboyJoanna No he hasn't. If it was that, the 'behaviors' would be there all the time wouldn't they? & not masked at school.

Thank you Girlattheback

Wow struggle, he is telling you one very big autistic trait - that he doesn’t like change. He has an LSA at school? If he is fine at school, why does he have one? Is it just for the class? If he has an LSA that spends time with him, he isn’t fine. There is a group called Not Fine At School on FB.

Cowboy is asking about strep because of a condition called PANS. Not really an area of knowledge for me, but worth considering https://www.spectrumnews.org/features/deep-dive/how-a-controversial-condition-called-pandas-is-gaining-ground-on-autism/

You have done amazing work so far in taking the reins! I would consider asking the GP for a referral. Is the the organisation you have been dealing with https://www.barnardos.org.uk/get-support/services/suffolk-neurodevelopment-pathway falling through the gaps hey? Show them their own website - v useful for your complaint!

imip I know, I actually couldn't believe that he just came out & said it, it probably sounds silly but it was absolutely amazing to hear, since he rarely talks about his feelings.

Yes that's the Barnardo's one (Please don't say there's anything wrong with it?)

It's the LSA for his class. There's 4 for the year 6's, I know the other 3 but hadn't met this one yet. She had a busy week with my kids as she was the one my daughter spoke to about being hurt by him the other day.

At parents evening, his teacher was saying things like 'I'm always extra careful with moving seats & changing things around, with regards to your son', but I don't know if she's saying it because otherwise she thinks he won't be able to manage it, or just because she's aware that he has these meltdowns at home due to the changes in class.

I think that Barnardos is until 10 in your area and 11 onwards is under the NHS - just goggle autism diagnosis and Suffolk. Nothing wrong with Barnardos per se, they are just commissioned to do the work. But I wonder if age cut off had something to do with it and hate keeping entry onto an 11
plus waiting list?

imip I've heard, from other parents, about it being a separate list once you get to high school.

All things going well, we (School & me) were hoping he would have been assessed by then, I remember the Senco saying to me back when we filled out the ND forms 'We have 2 years before high school so hopefully it will be done by then'.

I have left 3 messages with his high school now to try & get a meeting/a look around as a parent but they seem to be awful at calling back & arranging these.

Hi there, I wanted to jump in on the PANS / PANDAS point by the pp. My DD has PANS, it took years to get a diagnosis. Before that she was misdiagnosed with all sorts, I can’t even begin to tell you what we’ve been through. The thing about PANS PANDAS is that there are all sorts of what most Dr’s consider to be disconnected and untraceable symptoms and it’s progressive, it’s weird and it’s also physically disabling.

Since she was diagnosed I have read everything there is to read about the condition. (The article casts doubt on the condition that is not there irl in the medical community in the uk). The hours long meltdowns & rage your son has resonate as does destroying the house but you haven’t mentioned anything else in your posts that sound like PANS or PANDAS.

If you read the symptoms list and your child has it, it’s like a lightbulb going on. You just know it’s the answer.

Thank you Girlattheback I'm glad you finally got a diagnosis for your daughter, thanks for sharing that, it sounds like a long & stressful & frustrating road for you all.

No, it's not jumping out at me that it's Pans. When I read PDA literature/symptoms, that's it. That could be written actually about my child.

I've not heard from the Social worker.

I've left a message with Camhs asking if they are taking on new people (They weren't last time I checked)

I had a call from my son's teacher saying that some other kids weren't behaving & he made a noise which made her look at him, & she saw him pick up the scissors that were in front of him & made like a stabbing motion to himself. She took him out of the classroom, they had a chat & he was fine. She's counting this as 'The first time we've seen anything concerning in class'. I felt like I couldn't breathe on the phonecall & felt like my seat had been pulled from underneath me like 'Now it's starting at school'... but I suppose it's a good thing really isn't it, that they have 'Seen' it.

I’m sorry the Social Worker hasn’t been in touch. I guess they only contact if there’s news?

I would think that his teacher starting to see signs at school is kind of positive, although it’s one more thing for you to worry about. Are the school part of the appeal to Bernardo’s? Having their support saying there are behaviours showing at school has got to be a good thing?

Girlattheback I was hoping for some kind of 'Sorry about that, I will look into it' or something, after I left the Voicemail & email last Wednesday re him not being on the ND list anymore. That's all, just some kind of acknowledgement.

School put their side across with the original paperwork, it was just myself & the Senco filling it in then, but when I told her he wasn't on the list anymore & asked if she knows what I can do now re another referal or something, she said we have to wait for the social worker to tell us.

I heard back from Camhs they said they can't put him through on their end because he might still be accepted into Barnardo's.

So still no further forward.

We had our last meeting with the support worker (that I asked for, to say goodbye to the kids)

It left them very confused as she kept saying 'Myself & the Social worker can't work together' & they kept saying 'But we can't remember who she is! When are we going to see her? Will she come to school to see us? Will she do meetings at home like you did? When will we see her?' & she didn't really have any answers.

It would have been nice if she'd come with a date 'You will all see the Social worker on 'This' date'.

Anyway. I feel very, very alone. As I always do lately. It's now officially just me & the social worker.

She did say that she would email a complaint to Barnardo's for me about the ND referal not being communicated. But that's the last thing she's doing 'For' us.

I spoke to Emotional well-being today. Quite confusing. She said my son needs to have counselling through Barnardo's before he can go back on the ND list. He was on the list for counselling before but somewhere along the way he just wasn't on the list anymore (I'd actually forgotten about this)

But I remember now, mentioning it to the Support worker at the time & she said something like 'He won't open up to a counselor anyway, & we have other things coming up, so it's not needed'.

Anyway (Barnardo's aren't coming across well here) the reason he wasn't on the list for counselling anymore is 'Our error & we can only apologize'. So he's now on the list again. Apparently the waiting list is 'Only' 6 weeks & I didn't get anywhere with my protests of 'Its 6 weeks on top of all the time we've already waited'.

(Not holding my breath that this counseling will work. It's online & my son isn't going to open up to somebody on the tablet, sat at home)

It was a frustrating phonecall as she was clearly just reading standard questions & anything 'Extra' I said, just got a 'Bless him'. She asked if he smokes or drinks or there's any substance issues. He's 10.

I sent an email afterwards complaining about him being taken off the counselling list & now being told it's my only way back 'In' to the ND list, The same woman phoned me back saying the email had been forwarded to her.

She apologized again & said she's written a note on his file about what happened last time. She then said that she wouldn't normally say this but there's nothing to stop me starting the form again from the beginning, now, & just say he's on the list for counselling because by the time they read it, he should be done with the counselling.

Fair enough.

Now though, I've realised that I have nobody to help me fill in the form
I'm not sure what to do. I suppose I can't use the previous form with the support workers notes? & there's no point asking the Social worker as she never answers me + she's only met my son once so doesn't know him. The school Senco will most likely do it with me but last time all she wrote was 'We don't see any of these behaviours at school but are extremely concerned about his behaviour at home' & I suppose, apart from a few bits, she still would say the same.

imip Or anybody else, Any advice?