How to cope as parent of a teen on the spectrum/adhd/ocd/pda/anxiety

[Sunshine982o27]

My son is 13 and has all of the above most certainly, but no diagnosis as cahms said too high functioning to refer for assessment so just provide therapy which doesn't work. Son doesn't listen or retain the info. Currently back on the cahms waiting list. He's on the sen register at school.
During one day alone he cycles between moods ranging from very low to very high probably every 30 minutes. The tiniest thing will trigger a mood change.
He is very hard work to be around at home.He is very domineering and his moods affect everyone around him. He masks well at school, as he's getting older so we get the brunt of it at home even more than when he was younger.
He also goes through phases of habits/phobias/making certain noises/ repeating words and phrases over and over .
He also has extreme health anxiety/hypochondria. He has a lot of sensory issues such as the way clothes feel, wearing clothes for the wrong season, cannot be barefoot to the detriment of his foot health .
He can also be an absolute joy to be around (when everything his going to his liking) .
But it is very mentally tiring for me and I'm struggling abit. It's his birthday today and he's even worse than usual, hasn't cracked a smile all day even though we've spoilt him rotten.
If your child is like this how do you cope day to day and try to keep some level of peace for the other family members?
His moods affect me alot and I also suffer from anxiety. My husband shows no sympathy towards him at all , or me, and says that our son does have full control over it all and is basically just a pain in the rear. This isn't true, he has such complex issues and Im sure doesn't want to be suffering like this. He is exhausted at the end of every day but can't sleep.
As he's getting older I'm starting to worry about how he will be as an adult, how he will maintain a job,(has terrible time keeping and organisational skills) friendships or have a relationship. I am starting to feel he would not be able to manage living alone as he is so fearful of things. I don't think he'd change his clothes or wash , or look after his home properly as he would get overwhelmed very easily. He wouldn't be able to pay bills on time or manage his finances. I'm also hugely worried that he will get depressed very easily or even worse.
Anyone with a child similar? Do you indulge them as my husband says I do, talk things through with them, show them sympathy,or do you ignore it like he does and stop giving attention to it in the hope he will calm quicker in his meltdowns?

My son is 13 and recently diagnosed with ASD/ADHD (although struggled from the beginning of secondary school and we have moved schools to try and help him).

If you can afford private OT assessment (not cheap I know) this has been the most useful in helping my son to understand and identify his emotional state and with tips for helping regulate (e.g. even very simple things like drinking a cold drink through a straw).

The OT also recommended rest breaks at school and these have meant he is coming home much calmer.

Also if he is sensory seeking (things to chew, or weighted blankets, or music) may help with mood?

I would also try and push for accommodation at school as this should not require a formal diagnosis and if he is struggling at home this could be because school is more demanding now.

His school has lots of things in place for him, he does well there and has lots of friends so that side of it is great, but then when he comes home he's a completely different person. He's like jekle and Hyde.

If he is coming home from school moody and upset it may be because of school environment (sensory/social/demands). So could be worth conversation with SENDCO about what else they can offer e.g. uniform accomodations, quiet space for lunch etc.

^this. Appearing to cope at school but exploding at home is known as the coke bottle effect. It signifies unmet needs at school. If school life was easier for DS, home life would improve too.

I second an OT assessment too.

Complain about being refused an assessment because DS is ‘high functioning’. All high functioning means is there isn’t a co-morbid learning disability. It is not a reason not to assess.

If DS struggles with sleep, request a referral to paeds or a sleep clinic. There is still likely to be a wait but it may be less than the wait for CAMHS.

Is DS receiving any support with emotional regulation?

What is DS’s diet like?

Some parents find counselling helps. Noise cancelling headphones help with the noise. Supporting DC with additional needs isn’t indulging them. Would DH say the same if DC was physically disabled? For some, ignoring will make matters worse. Although for some, giving them space in the moment helps.

my 12yo DD has just been diagnosed with autism. the reason we pursued a diagnosis was because of the constant meltdowns after school which became so much worse after starting secondary in September. as a previous poster has said, this is the coke bottle effect / 'after school restraint collapse'.

we thought for a long time that as we experienced these problems at home, and school told us she was fine, that it was a 'home' issue. but it's very clear now that in fact her mood/behaviour after school is entirely dependent on what happens during the school day, and the endless crying post-school and anger if we so much as talk at home, is basically a product of emotional exhaustion caused by 8hrs of successful masking and sensory (auditory) overload.

you need to unpick your child's school day and see what you can do to release stresses / smooth transitions etc (such as scheduled quiet/alone time). even if my DD thinks she doesn't need this 'in the moment', she understands that if she doesn't do it, by the end of the day her internal battery will be flashing red and she will be much more prone to meltdowns.

realise i didn't answer your question at all: in terms of how i have coped, honestly i didn't / don't always, it can be extremely tough to live with. there were many days when my daughter would cry in the car on the way home from school because of the above, my 10yo DS would cry because he was so frustrated that DD was crying yet again and because she would routinely shout at him/me to not talk etc. and sometimes i would cry too because everyone else was crying.

the only thing that's made all this better is getting to the root cause of the issue which was a 2 stage process - firstly realising that after school restraint collapse is a real thing with loads of advice and support available online to help.

secondly probing into the fundamental cause of the ASRC which for DD is Autism, and then working with school to manage the many triggers during the day. collectively, this has improved everything a thousandfold and life overall is much calmer and happier for her and consequently for me and the rest of the family.

my natural instinct is of the 'indulge' variety as you describe above OP. my husband is more of the 'get over it' type approach. both have merits, to be honest, but it's totally unpredictable as to which method if any DD responds best to, in any particular circumstance. so we are tending to focus our attention now on the root causes, to try and manage those, as it seems fundamentally easier to address these and try to manage triggers, rather than dealing with the behaviour that arises from overload etc.

Hi, my son is 14, in year 10 and currently waiting an ASD assessment. He already has a diagnosis of DCD (Dyspraxia). He usually comes home from school reasonably happy but it’s at bedtime that he just gets overwhelmed and upset. Tonight he’s been upset saying school is too serious, he’s anxious going there each day. He’s about to sit mock exams and he’s going to find them really difficult. We’re three days into term and he’s already saying he can’t go in tomorrow.

We all struggle as a family and I don’t have much advice as I’m still trying to navigate my way through all of this but I want to say you’re not alone, I could have written you post word for word!

My view now is that his mental health is way more important than exams or school and right now I’m focusing on him being happy and regulated and finding out how we can help him navigate the next year of school. X

My DS is 14 and diagnosed ASC. He’s fine when as you say ‘everything is to his liking’ and I indulge him which means lots of accommodations at home. I’m finding it difficult though as my parents, rightly or wrongly, pushed me hard and had very high expectations. I feel as though I’m letting my son drift by not being more on it. I feel I never figured out how to do low demand parenting and am pretty much no demand other than going to school, trying to keep some activities going and d reasonable bedtime. I kind of feel like I’m failing to parent and prepare him for adult life with this approach though 🤷‍♀️

I've always felt that my child has his whole life to grow up and only a small amount of time to be young.

It sounds to me like you are doing great with your son if he is able to attend school, keep activities going and have a reasonable bedtime!

14 is still very young and there is no limit on what he can do as an adult.

Y