Unknown unknowns in autism


Monday, 17 June 2019

Out of my mind

Yes, I'm going out of my mind with worry about my autistic son, now an adult, whose life appears to be completely stalled. He is stuck at home with little prospect of anything changing. He resists it, and there are few educational or employment opportunities for people like him.

I am exploding with emotions, here are just some of them:

Resentment that he expects me to do everything for him even though he is physically and intellectually okay.

Anger at the lack of support, information and advice to help him.

Embarrassment when I have to pay people to help with household and garden jobs instead of him helping me.

Frustration that I'm told nothing now he's an adult, but still expected to do everything for him. But not told what I should be doing for him..

Despair at the waste of his potential.

Sadness that he's not happy even though he plays his beloved video games all day.

Fury that my mental health and any chance of either of us having a good life seem to be over.

Anxiety when he gets angry or shows symptoms of mental health difficulties increasing again. 

Depression over our lives and the lack of understanding from friends, family and the community. 

Guilt that I must've done something wrong.

Loneliness at the isolation of our situation.

Fear for the future. It's looks very bleak indeed.

Tuesday, 21 May 2019

Failed and Failing

Update time: one 18 year old autistic young man with a very high IQ whose OCD is currently under control following a stay in hospital.

So why am I so angry and depressed?

I've finally realised that it's because I cannot stand seeing him sitting at home all day playing video games when he should be studying for his final school exams and preparing to go to College.

He's not motivated at all, he will say that. After all his disability allowance keeps him in pizza and chocolate...

Nor is he happy, he will admit that too.

If I try to say anything to coax him to improve his life - even using declarative language - he just says I'm making him anxious. That usually makes me back off to avoid a meltdown or descent into other problems such as a resurgence of OCD.

This goes against all my principles of self reliance, independence and using all the talents you with which you were gifted. It's a bitter pill when having an autistic son means that I cannot use my talents, because I am definitely pretty useless as an autism parent...

Friday, 22 June 2018

If you tolerate this

Teenagers, autism, school phobia, anxiety, demand avoidance, controlling behaviour.... Where does it all end? I heard of a 25 year old recently who has now been playing video games in his bedroom for 4 years. FOUR YEARS. Is this what will happen here if I don't intervene?

The acute crisis here has passed, but instead of taking steps towards a normal life, my son is retreating further and further away, and finding more and more reasons to be anxious even in the house. So his controlling behaviour has scaled new heights.

All the independence skills I carefully nurtured have been abandoned: If I want him to eat, I have to cook him something or order a takeaway (he refuses to use a phone and is dubious about the security on so many websites).

If I want him to wear clean clothes, I normally have to wash them - he will sit in his room for days on end in grubby pajama bottoms rather than spend five minutes loading up a washing machine. I don't nag him either.

I have never felt more miserable, and he is not happy either. Yet he will not or cannot engage with any of the therapists that have met with him. He refuses to be labelled now, so is not part of the autistic community, does not ask them for advice, and will not engage in any new activities that are organised for autistics. He has lost all interest in education, he considers and dabbles half heartedly in a few pastimes, such as playing the piano in his room, but without any commitment. He will watch me work from morning until night, and it never dawns on him now to offer to help as he did when he was younger. He says he is not motivated, that all his energy is used up in trying to stay calm. Could this really be true? If so, why is he so anti medication that he is insisting on being weaned off the very low dose that he was taking?

He is totally stuck, and so am I.

He will be 18 soon, and my responsibility as a parent officially ends there.

Do I continue to tolerate all this (if I even can bring myself to) or do I find a way to disentangle this emotional knot and set us both free?

Wednesday, 15 November 2017

I'm scared too

A letter to my 16 year old autistic teenage son who tells me he is afraid of everything.

Dear son,

I can’t imagine being afraid of everything, but you’re not the only person in the world who is scared every day.

I’m scared that I will l be overwhelmed by your misery and negativity.

I’m scared that one day I will give up and won’t be able to cope anymore.

I’m scared of falling ill and what will happen to you then.

I’m scared of dying before you are confident about living an independent life.

I’m scared of dying before I get a chance to really live again.

I’m scared of something happening to this house as I don’t have time to maintain it properly.

I’m scared that your poor eating habits and lack of exercise will make you ill.

I’m scared of making a mistake, of saying the wrong thing, forgetting some vital paperwork, overlooking something that could help you.

I’m scared that no one else remembers that you were once considered gifted, interesting, funny, curious, affectionate and someone with huge potential.

I’m so scared tor you, and scared for myself too.

I have to face all these fears every day, and try to think about something else every time they invade my thoughts. You’ve told me you don’t want to be one of those autistic adults who while away their lives in their bedrooms with a laptop and a pizza delivery company on speed dial. I don’t want that for you either. But you have to work with me, you have to try, you have to stop framing every single decision as a demand that puts you under pressure. Hiding from the world is not going to make your fears and obsessions go away. It is going to give you the time and space to obsess about them even more, which will make everything worse. I know you must be feeling rejected by all the schools and services that don’t want to help. But I’m here, I want to help. But you have to help me help you.

Monday, 25 September 2017

I can't go to school ... because of YouTube

Two videos on YouTube were all it took to break our son's will to go to school. They weren't horror videos or anything like that. But they worried him so much that when the same subject was raised in class he couldn't cope and I was summoned to bring him home.

That was a week ago and the anxiety has barely lessened.

He's in his final two years at school, and began the term full of good intentions to knuckle down, study hard and get a place at University - he has the brains, but autism seems to have robbed him of the ability to make full use of them.

This is the fifth year of school refusal and my ability to cope with it has all but gone. Getting him into school was hard each day, but if he went, then I felt the day was a success. Now we both feel like failures.

On top of that, I'm terrified for his future. Because what employer would keep on someone who takes a week off work due to fear? Caused by YouTube?

Friday, 24 March 2017

Five positives about school refusal

Usually I describe school refusal as the most difficult and upsetting challenge I have had to face as a parent. But it's not all bad, so today I'm sharing five positives about school refusal.

1. I get to spend a lot more time with my son, and learn about his interests.

2. I can put a wash on and leave the house. He's happy at home alone for short periods and I am less anxious when I don't have to remember to unplug and check everything before shutting the front door

3. I have more time to share my thoughts and outlook with him and to teach him life skills.

4. Without the pressure of school he's developing new interests: I suspect his obsession with video games is partly because he needs their structure and predictability after the chaos and confusion of school.

5. He is much happier at home.

Tuesday, 7 March 2017

Why we want our son expelled

Disclaimer: we don't really want him to be expelled, we want him to go to school, like every other teenager. But he won't.

He goes through phases of attending well, usually after an intervention from the school, but then there's a holiday or a term break and the school refusal begins again.

He's not defiant about it. He doesn't even seem very anxious any more. He seems quite happy to be at home, reading, helping out with chores, perhaps a bit of cooking or shopping too.

I asked him what goes through his mind when he decides not to go in. The notes he made do not add up to anything that makes sense to me. They do not explain to me why an intelligent autistic teenager would risk his future by staying at home during these crucial years - and he's also refused to be home educated or even unschooled.

He keeps saying he wants to be able to go to school, and then blames us and the school for making it too hard.

I'm also so embarrassed by all the waste of resources involved in his schooling. A place in an autism unit that he's wasting. An SNA that presumably is being reassigned. A taxi in the morning with a space that could be used by another teenager.

I think he needs a wake up call, and the school has suggested many times that he should go elsewhere, but where? Most schools are full, or cannot or will not cater for autistic teenagers who refuse to go in!

Perhaps the threat of expulsion would make him realise that the world does not owe him anything and however hard it is, he has to try to go to school, and if he does, we will support him every step of the way.

What do you think?