Relationship deteriorating and I don’t know what to do.

[crosser62]

My ds is now nearly 16.
From being tiny his behaviour has been very challenging.
Now behaviour includes the following:
Chewing/biting things so collars of t shirts, my sofa cushions, coat edges, I find pieces of chewed plastic all over the house just thrown like the house is a rubbish tip.
Shouting out for no apparent reason.
Banging everywhere he goes, banging or tapping his hand/feet/knees against things.
He is vile and argumentative with his little brother.
Constantly on report or in detention for “low level disruption “ is doing gcse s at the moment.
Doesn’t and has never been able to concentrate or focus on anything.

Worryingly though he is withdrawn and a very closed book. Has spoken about possible suicidal thoughts.

Dh who is usually fantastic with him is loosing patience with him which is unheard of but that’s how bad it’s got.

He won’t speak to us about things so it’s so so difficult.

What can I do and what am I missing with him?

Have you had him assessed for special needs? This is very unusual behaviour for a 16yo.

Do you have a gut feeling about what could be causing his behaviour? Has he ever been assessed for anything or received any input for his behaviour? Are the school doing anything to help?

I think in my gut that he has adhd.
Historically he has been totally different to his peers.
He is worlds apart from our other child behaviour wise.
Schools from day one are adamant that there is no sen.

Pathological Demand Avoidance. Have a look.

It's on the autistic spectrum, and shared many traits, but crucially not all so an asd diagnosis often falls through.

Anxiety is the moderator of everything. The chewed things sound like sensory issues which are often there too

Go to the gp urgently if he's expressing suicidal thoughts. That he's shown the behaviours from a young age could mean an underlying issue.

Look up pda society and national autistic association for more info

Ignore the school if you think there's something there. My dd showed no signs of autism according to the school. She was diagnosed age 16 following a deterioration in her mental health

Bypass the school and go to your GP for a referral. It will take a long time though but get the ball rolling. The mention of suicidal thoughts alone should make the GP pay attention. I'm sorry the school is being so crap.

Thank you so much, I can’t thank you enough.
I’m so worried about him and I have always known that he isn’t right.

The banging has been since he was tiny.
Didn’t sleep a full night through until he was 5 and at school.
Destructive behaviours, took the backs of every electronic toy, could dismantle stair gates like lightning, could escape from high chairs/car seats/ cots with zero effort. Flooded the bathroom/kitchen numerous times.
Could not be left unsupervised ever, I mean ever.
Couldn’t go to toddler clubs or library as he would be wild,
At 12 months old at a child’s party I had to rescue him from behind a bouncy castle as he was dismantling the electrics and blower.

That’s a small snippet.
He cannot follow instructions so for example has to be asked repeatedly to perform every single task, getting him out to school is a living nightmare.
Can’t walk in a straight line, has always had to climb walls, run backwards, skip, but is incapable of just walking.
He has absolutely no concept of how his behaviour impacts others. So the banging and shouting out, despite us explaining to him how utterly utterly miserable it makes us, he carries on.

Now, when he can articulate how he is feeling, he can’t for some reason.

We sought a private pda diagnosis. It's not just straight up autism or autism with demand avoidance, but a separate set of behaviors that include autistic behaviours and falls on the autistic spectrum. Honestly, join some pda groups on Facebook, ask questions. Executive functioning issues sound like the flooding things, planning to do stuff and manage time... the inability to handle and discuss emotions for my dc is when they're flooded with huge feelings and anxiety just gridlocks everything then they shout and become aggressive (every time they're angry it helps to tangent inside they're anxious even though it doesn't look like that) . The shouting and banging and chewing sounds like sensory processing issues where he's looking for sensory input (you can be sensory seeking as well as sensory avoiding)

Obv I am not diagnosis your child over the Internet. I didn't look into pda for years as I was put off by the "pathological" past of the pda label. ("nowt pathological about my kiddie") but talking to others it became clear and the ed psych and paediatrician say he's like a poster child (local NHS paed said he was simply naughty which I knew to be untrue)

And just in case - some areas recognise pda and some don't. My paed who saw us through the private clinic is a well respected NHS consultant. He knows it exists but because our health trust haven't accepted it, can't diagnose it through the NHS. The national autistic society are pushing for everywhere to accept it as they're fully aware that it exists.

Apologies if I'm banging on and it doesn't fit your son, but it's not that well known, and yet understanding it is crucial to try and sort the child so I like to spread awareness when it might be a possibility

Oh bless him, if he’s experiencing suicidal thoughts the behaviour may well be linked into this. I’d definitely advise you to seek professional advice. There’s so much pressure on young people these days.

I hope you get this sorted, I can imagine it must be really stressful and worrying

My DS has ADHD and has some of these behaviours. The best thing is that you go to a clinical psychologist experienced in adhd/ autism/ learning difficulties and get an assessment done. If you have any money or access to private health it is worth paying as the wait is so long through NHS.

But yes- get to the GP and ask for urgent referral as you need some help. So sorry you are going through this. I can’t understand how the school can say they see no evidence- is he doing ok at school with no problems?

I see that there are problems with disruption, but how is he managing academically?

Badly.
Low level disruption they say. Shouting out, not engaging or concentrating. On report constantly, lunch time and after school detentions, phone calls and emails from school every other day. Meetings galore.
Performance is poor.
He has extra maths lessons at home, he does great in these but is constantly looking at the clock.

His expected grades are just scrapping by, we do not expect any passed marks tbh.

Some days, I just want to get in my car and drive far away.

Approx how much for private assessment?

Sounds very similar to my son. Minus the dismantling things. Mines never been diagnosed with anything.

I understand just what you mean about getting in the car. Those phone calls from school are driving me insane. I think the assessment we got in the end was about £1500; I was lucky in that I had private health from work at that time. There may be an adhd/ autism group that can help you - near me it is add-Vance; they were very helpful. He obviously has some kind of special needs otherwise there wouldn’t be these problems. My DS improved a lot with medication. Unfortunately he has now decided he doesn’t need it so it’s a bit of a nightmare again.

Depending where you're based you could try Re:Cognition Health in Harley st (plus branches elsewhere in think). Adhd assessment was life changing for my daughter and has transformed our relationship. They also assess for asd and general mental health

Harley st I’m afraid is way way way beyond our means but thanks for the suggestion and for taking the time to reply

Did you get to the GP and ask for an urgent referral? I think that as he has mentioned Does your DS perceive he has problems himself that he might get help with? The suicidal thoughts will be a red flag - but you may need to push very hard as the resources seem to be so much in demand.

His schools sounds like it's crap........I'd put money on him having Autism or something along those lines.

Seek serious help, his future is at stake here.

You can speak to IPSEA to find out what the school should be doing