HIgh Anxieties and episodes of getting stuck

[CT76]

My son who is 19, ASD, Learnng and behavioural difficulties, has high anxieties and has episodes of getting stuck for hours. When he gets these episodes there is risk of crisis which we dont want for him. 2 days before returning to school until this morning he has been more anxoous than normal and has been stuck several times. It is not good for him 😔 Anyone else in a similar position. He has medication and has a psychiatrust and psychologist. Thankyou

[Bluey203]

Hi CT76, I could have written this, my son is also 19, severely autistic nonverbal, with SLD, OCD and anxiety.He has periods of getting 'stuck', we know this is always caused by anxiety, thoughts going through his mind about something he is worried about or an internal pain he cant locate to show where. These episodes can also lead to destructive behaviour and explosive aggression or self harm.

We try to address the behaviour by taking him for a drive, and try to eliminate what the cause is. But if his mood is too low distraction will not work, we also give pain killers to rule that out.

Before things escalate we give him PRN medication prescribed by his psychiatrist.

We had to pull our son out of his special needs school at 18, he couldnt cope with so many voices and preferred to be outside, so he now has 15 hours per week with a PA that takes him out.

There is usually an underlying reason for the behaviour, hormones certainly made things worse for him as soon as body hair appeared, ive heard it settles down at 25yrs, we can only hope.

Really hope your son improves soon ❤️

[CT76 in reply to Bluey203]

Omg sounds so alike. My son is the same .. if he has got too low its almost too late for any distraction. Can i ask what medication the psychiatrist has prescribed? Back in 2017 I thought that my son would have to finish in his special needs school as he wasnt coping there and they werent coping. After a year he became more settled, but not back to how he was prior 2017. He cant cope in the class and has his own safe space and time spent out is limited. I think something there is not right and its reflecting on his anxieties at home, his safe place. Crazy thing is services feel its in his best interest to attend a residential college in September when he finishes, to a placement similar to school, even though I have put my concerns across x

[Bluey203 in reply to CT76]

You know your son best, trust your instincts. My son was never happy in school due to sensory issues, he managed to escape on numerous occasions over the years, which was very worrying. During holidays his behaviour would become more challenging a week or two before the start of school ,and he would keep repeating 'school', not because he wanted to go but because he found it so stressful.We decided a PA would be better for him rather than a day centre when he left, as a day centre would be too much like school. So now he does what he prefers, walking swimming, going for a drive.

He does still experience anxiety which as I said got much worse recently due in part to hormones. The medication my son takes is aripiprazole 6ml per day, with 2ml as PRN (when required) and 100mg sertraline. He was recently prescribed 2mg lorazepam as PRN to have before visiting the doctors or dentist, or when he needs a vaccine.

Take care x

[CT76 in reply to Bluey203]

My sons anxieties get worse before returning to school too. Its hard as he seems to want to go . I think he enjoys the journey there, looking for traffic lights, stop and go signs , police on the way and then once there finds it challenging. Once home he is overly anxious x

[Michele1965]

Hi CT76 could I ask you to describe what 'getting stuck' looks like when this happens. Thank you in advance. Michele

[CT76 in reply to Michele1965]

Yes ,sure. He switches off and does not respond to us . If he is sat on the sofa he puts his head down , and hands on his thighs. He gradually slips down from sitting to going to lie on the floor. Occasslionally when I try to engage with him at these times he will shout aggressively. If he has reached the floor this is the time he is more likely to get into crisis ( aggressive and destructive )

[Michele1965 in reply to CT76]

Thanks so much for this CT76. This is so similar to my son whose face also changes before his while body seems to stiffen and he starts to bang his head with force or bite or headbutt if we get into his space to keep him safe. My son who is 18 years finds school very difficult and has his own classroom and his own staff team also is taken, like Bluey's son, on drives walks and swims by family. Indeed this and watching VHS DVD children's programmes/ music is all he does. He is also on 30mg aripaprazole and PRN as well as daily diazepam. He is also being offered a ft day center when school finishes in June but I know that the chance to him settling there is extremely slim as his anxiety and need to be in his own environment is well evidenced but not being acknowledged by those who make decisions about our children's future. I do hope that you are heard and your son gets the support he evidently needs. We have been fighting for years pleading for the most appropriate care/support to be provided but are being offered residential setting as it's the favoured choice for our SLD autistic non verbal children whose behaviour challenges when they are anxious. The support in the community /home needs to be greatly increases and resources given to allow our children to flourish/ feel safe in their own preferred environments doing activities they like with people they trust.

[CT76 in reply to Michele1965]

All our boys sound so alike dont they. My son is going to residential college in september ( I am not keen mostly as its residential. Theres has been nothing similar in place for a year now i.e respite, to show how he would manage away. Before he turned 18 and had respite he wasnt coping well there and wouldnt leave his bedroom ) I wish there was something locally but there isnt due to staffing and covid 😏. Medication wise my son has 200mg sertraline and 40mg elvanse in the morning, 12 pm he has 0.5 of risperidone and 15 mg if dexamfetamine, at night risperidone again and melatonin. He has diazepam as required

[Michele1965 in reply to CT76]

I think it is crazy and reckless the way our boys are expected to up sticks from the environment they feel safe in to go away to an environment where like school only more intense they will struggle and become so much more anxious...all fallout from anxiety that is so well documented you could write the script will inevitably follow. We are fighting for an annexe to our home with support staff coming to our son for our respite and his independence but it is a really hard struggle with professionals saying they only have to do their statutory duty not best interests of the person. The future is such a cliff edge and I'm clinging by my fingernails at this stage. Re meds my son is on guangacine and medikinet as well as formerly mentioned. He got one vaccine shot for covid when under general anesthesia for teeth check but won't let anyone near him for any injections or examinations so we are always guessing re his physical well-being. I hope you have a good support network and be healthy and strong. I find no Matter how exhaustive and relentless the caring role that the interaction with the professional bodies who have the power and such an unqualified say over the future of our children is what destroys parents and is staggeringly unjust .

[CT76 in reply to Michele1965]

It is madness. His social worker, psychologist and school are all aware of my sons high anxieties ( there are safeguarding concerns also because of his meltdowns ) I have expressed my concerns of this upcoming massive change and the effect it will have on his anxieties and wellbeing but they seem to disregard my concerns. Services in the county are limited because of staffing and covid and they feel him being home day in day out will impact him and the family. I think it will impact him more going away 😏

[Michele1965 in reply to CT76]

Re staffing and covid indeed they have become the latest scapegoats/excuse for failure by a system that is not accountable. The concerns we have for our children are not new but as relevant years ago long before staffing and covid...weavjust other reasons and excuses forwarded for failing a community of people that have been long neglected for services for many years. The lock away from society has been the typical response to meeting needs of the SLD autistic non verbal commuity forever. Our children are marginalised discriminated against and hidden not embraced or welcomed into society.

[CT76 in reply to Michele1965]

Thats exactly how I feel ..all an excuse. I am with you on all

[learner01]

Dear CT76 and Bluey 203, is it possible that your sons have sensory processing problems? People can be over sensitive to things like noise, touch, smells etc. It might explain your sons’ anxieties about school. Schools can be very noisy and busy places and if a child has sensory processing issues the sensory reactions they are experiencing might be making it very difficult for them.

The Out of Sync Child by Carol Kranowitz explains about sensory processing problems and how they can be helped.

occupational therapists are able to diagnose and advise what might help.

[CT76 in reply to learner01]

Hiya, yes my son does have sensory processing difficuties.. hence in school he has his own room attatched to the class .. he cannot cope with the noise / unpredicibality of the others. When he arrives in school he puts his head down and darts to the classroom to avoid others in the corridor. He does leave his room at times but it is never for long periods and he tolerates one other pupil in his room with him at times.

[learner01]

Maybe he simply can’t cope with the way his body is reacting to all the sensations it is getting. He may be ‘stuck’ because his senses are overwhelmed and it’s his way of coping with what he’s feeling. It would make sense to try and withdraw from what is hurting you and to try and protect yourself from further stimulation. It might also be a form of dissociation which happens when someone is in a situation that overwhelms them and they can’t cope with.

His anger and aggression afterwards may be a way of communicating being upset at having been so overwhelmed.

[CT76 in reply to learner01]

Yes makes sense. We know what sensiry difficulties he has and we have put alot of things in place at home to help and school are saying too. How can I pinpoint what it is?

[Cakes2695]

My daughter is 26 she was put on lorazepam it made her even lower she use to cry & cry keep a check on this. She now takes Fluoxetine 5ml and diazepam 2mg as required we also used paracetamol as PRN. My daughter is verbal but her understanding is really low she also has sensory issues along with ADHD -Autism. When she loses control due to her anxieties nothing seems to work and it can last 3 plus days until she regulates. Living with her is hard at times on the rest of the our family. We also see destructive behaviour and explosive aggression or self harm. She lashes out at me . We address the behaviour by quiet space or a long walks recently she was in a supported living setting this was a disaster.

[CT76 in reply to Cakes2695]

Its really difficult.. on us but more so on them..hate seeing them suffer and feel helpless x

[Bluey203 in reply to Cakes2695]

Thats interesting about the lorazepam. The medications are a nightmare, really its all trial and error. My son can take several days to return to an even keel after extreme anxiety too. When CT76 described how her son would sit very still and controlled, head down hands on top thighs which then escalates to a meltdown is weirdly describing exactly what my son does. We all know there is a reason for the behaviour but it is so hard to work out what.To be honest I dont know which medications really help, or if they're even working, many I havent heard of, we're totally reliant on the psychiatrists expertise. I dont think my sons meds are really having an effect. Sometimes I like to think they're helping him, but maybe thats wishful thinking when he's probably just in a calmer phase, right now he's going through high anxiety and we're trying to work out why.

We know where our sons are happiest living and what makes them happy, it is so frustrating and wrong that parents aren't listened to as soon as their child reaches 18.

Im about to start all the paperwork for deputyship, im going to try to complete it myself, all the forms are printed out, the pile of papers look very daunting. I just hope it will give us more control. As Michele1965 says, the future is such a cliff edge, things are stressful enough without so called professionals making life even more stressful.

My heart goes out to everyone, really hope things improve 🤗♥️

[CT76 in reply to Bluey203]

My son also takes days to return to some sort of level after an episode. Can I ask when your son gets stuck does it last hours? My son can be for up to 4/5 hrs 😞 with the meds, I also wonder if they help or not .my son is verbal but does not say how he feels and so on so it is all guess work really x

[tibs_Jem in reply to Bluey203]

can you let me know how you got on with deputyship and the cost. Thanks

[Bluey203 in reply to tibs_Jem]

Hi, unfortunately the paperwork is still sitting there. My son has had some very challenging behaviour over the past few weeks which has demanded our attention 24/7, hopefully things will settle for him soon and I'll get the ball rolling on deputyship.Here's the link for the information on the court of protection - gov.uk/courts-tribunals/cou...

[Bluey203]

Hi, when he gets stuck it can last between half hour to 2 hours, but will happen throughout the day. It can happen first thing in the morning when he'll just sit on the bed, or even in transition he will stay in the car and not get out to go in the house, but it always ends with self harm or aggression if we try to help him or even just talk to him, he is like a coiled spring with thoughts going through his mind, sitting still and frozen is his way of trying to stay in control of himself, nothing helps unfortunately x

[CT76 in reply to Bluey203]

So like my son.. can happen any time of day and anywhere. Its so hard for them, bless..and hard for us to see x

[learner01]

Dear CT76 , an occupational therapist who is trained in sensory processing disorders would be able to help assess what is impacting your son, hopefully pin point what the problem is, and advise on things that might help. If he finds lots of noise, or loud noise, a problem I would think that may indicate that his hearing is very sensitive so that may be why he cannot tolerate loud noise.

I also wonder if being repeatedly exposed to things that cause him a great deal of stress have caused him to go into ‘fight or flight’ reactions when exposed to them again. This is actually a normal response of our body to any danger it perceives, and happens before we actually have time to think about our reaction because it is the limbic part of our brain reacting to external cues from our senses.

If repeated exposure to loud noise has traumatised your son he will be reacting out of fear and not really have any control over his initial response because his ‘fight or flight’ response will have kicked in as soon as he’s exposed to whatever has caused it previously. Being exposed to anything that is associated with what previously upset him would be enough for his limbic brain to react which may be why he behaves in the way he does at school.

It may be that he has also experienced things that have upset him at school and so fears going to school.