DS (ASD) won't let friend go out!

[Toffeefudgecake]

My friend has a son with autism (he's 10). Recently, he has started to cry whenever she tries to take him out anywhere. So, for instance, when she arrived here the other day, he refused to come inside the house (although he has been here many times before) and had to be cajoled inside with great difficulty. He then spent his time crying and standing by the door trying to get out. We then went out to the park and he cried most of the way there. He was happily distracted by ice cream when we arrived.("It's yum" he said).

He was obviously very distressed, which was upsetting for all of us, but he was unable to articulate what exactly was wrong.

Yesterday, we met at a swimming pool, but, again, my friend's son made it quite clear that he didn't want to be there, by crying and protesting loudly. She is beginning to feel as if she should just stay at home, but doesn't want to become virtually imprisoned for the holidays.

This boy has a twin brother (who does not have autism) who has gone away to stay with a relative at the moment. But my friend feels that the son with ASD is very happy to be with her on his own and that this is not a factor.

We have discussed preparing him for what is going to happen, which my friend already does. And we have talked about giving him rewards and incentives.

Do any of you with children on the spectrum have any other ideas of how my friend can get out and about this summer? It is making her feel really sad.

Sorry, my title is misleading, but I can't change it now. It is my friend's DS, not mine, who won't let her go out.

I think hormone changes and differences in the way that schools start to treat 10 yr olds can make a big difference to many of us. It can make sensory differences and routine changes much harder than before.

I know that even now I'm terrified of swimming pools because of the smell, deafening echoing, the pain of the water and the cold floor, the rough towels, the pain of taking clothing on and off, etc. And because our eyesight sees shadows and reflections differently to most other people (new research).

I find it's a lot easier to go to scary places if I'm wearing something very comfortable and familiar, know exactly where I can hide for a while if I need to (quiet, safe space) and have something I can hug or wrap myself in for comfort. A thick jacket can be a good thing to pull round us, for example. Even a hat can give a sense of security for some of us.

If he can't say what's bothering him, I wonder if pictures would work? Sometimes even children who can speak will find it easier to 'think' using picture clues when stressed.

The outside world can be a terrifying place. So difficult to truly explain why unless you live in our bodies with our brains. But we need to find ways to cope with it, that's for sure.

My dd1 would be happy to stay at home as would my dh (who i suspect is also on the spectrum), i have found bribery is the only way (with both of them).

Maybe she could use a picture scedual or now and next cards (got to the park and then play on the pc for example).

My dd's are still young so i can bribe with ice cream and they are small enough to drag to the car .

She could try giving him a list of things to look for when they are out so he can tick them off when he see's them.

It's hard, so many parents of ASD children end up not going out , i hope she can find a way to help him relax more when out.

My ds2 would be the happiest child in the world if he never had to leave the house. He does because we amke him otherwise we would all become prisoners.
He is much worse during holidays etc.
TBH its not any one thing but all the changes, change in daily routine, no school, different childcare arrangements, later going to bed, later gettign up in the morning, no morning routine etc, etc.
Its hard for someone trying to make sense of the world when all their usual markers (times, places etc) are removed.

Even the thought of the things mys ds LOVES he finds a distressing thought at the moment.

To make it easier i have a 6 week chart on the wall (No dates or anything thats too complex for him) But just boxes we are ticking off each day.
It has in it the basic - no school, daddy working, mummy working, Nanna & grandad at our house. days when we have something specific we also have that in the box.
He can't read at all so we talk him through it & have little pictures.

It certainy doesn't cure the anxiety but I think it helps a bit.

Thank you all for your replies.

Amber - it is really helpful to hear your views on this. It is important to be reminded how terrifying this boy may be finding the world at the moment - he is not with his twin brother or at school, as usual, so it must all feel wrong and frightening. I think wearing something familiar and comforting when he goes out is a brilliant idea.

Marne - yes, pictures do also seem to be the way to deal with it. And bribery! He loves Shrek 3, so I have been considering having a selection of Shrek 3 books/DVDs for him when he gets here, as an incentive to come and a distraction from his anxiety.

Anon - interesting to hear that your son is worse during holidays. It makes sense, with normal routine being disrupted. I like the idea of a chart to show him what is going to happen each day.

I have passed on all your very helpful suggestions to my friend. Thank you all.

Can I just say how refreshing it is to hear from someone who really wants to help their friend. Its so easy for friends to just fade away and parents/carers to become isolated in these sorts of situations. You are a true friend.

My ds1 who is 8 and has ASD needs preparing for trips and a countdown, starting with days leading to minutes if we are going anywhere. If we deviate from what we say we are going to do he gets very agitated and/or has a meltdown. eg yesterday I prepared him all day for the fact that dh had said he would take us all to their favourite chip shop for tea, its a lovely drive through the countryside and we have been pretty much stuck in the house all holiday so far. He was fine, happy to go and looking forward to his chips - but, we forgot to tell him that on the way we were dropping a part off at the garage where our vw is being prepared for our holiday. Now he usually loves this garage, idolises the guy that works on our van and can't wait to go down there and talk at to him. However, because he wasn't expecting this deviation from the plans he couldn't cope with going there and as soon as we turned off the main road towards the garage he started to panic, then got cross, then tearful and ended up shouting at just about everyone in the car. Our fault entirely, we should have prepared him for the fact we were going there, even though we had no intention of stopping and were literally just dropping something off.

My ds is quite high functioning and its usually enough for him to have things verbally reinforced over and over, but I agree with others that a wall chart sounds like it would be really useful in your friend's son's case.

I love that you are thinking of having a set of his favourite things at your house - that is really thoughtful. Perhaps you could ask what sort of environment he finds comfortable as well (my ds loves to sit in small places, like behind the rocking chair in our living room) so you can perhaps prepare somewhere for him to feel safe.

Again, I think you are such a lovely person. We aren't even able to tell a lot of our friends about ds1's ASD as they simply wouldn't understand let alone try to take him/it into consideration. Instead we are often on edge and micro managing him the entire time we are out in the hope that they won't think bad of him.

Moosemama - thank you for your kind words. To be honest, it is experience that has made me understanding. And I don't like to see my friend or her son suffering.

My eldest son has been assessed for ASD twice. He suffers acute anxiety and has typical OCD symptoms. I read the whole of Tony Attwood's book on Asperger Syndrome and my son fitted it like a glove in many ways. However, psychologists twice found that he didn't have AS and I respect that. In fact, as he gets older and develops more empathy, I can see that they were probably right. However, as a young boy he had terrible tantrums and I learned a lot from him: chiefly, how not to give a hang what other people thought about me as a mother! I felt judged so many times by teachers and other parents that in the end I developed a thick skin. As a result, I am not in the slightest bit bothered if a friend's child has a tantrum in public, but I am acutely aware of how awful it is for her because I have been there.

Your experience with your son does sound very familiar to me. My own son has had meltdowns when we have suddenly decided to do something unexpected - pop into a pub to see friends on the way home, for instance (led to about an hour of crying on the pavement outside, until we could take no more for him or us) or decide to go out for a day. He also suffered acute school phobia for a term last year. So the anxiety aspect of autism is something that he suffers from, but probably for other reasons.

I also have a friend who works at the NAS and that, plus my own experience, have given me a lot of insight into how hard it is for those with autism and for their carers. Also, I childminded for a boy with autism who, I have to say, was no more challenging than my own DS.

My son still suffers acute anxiety and if he was given any diagnosis it would probably be OCD. He is also dyslexic. However, he has just had the best report of his life, which is a stunning contrast to his first few years at school when I heard nothing but negatives from teachers. It was heartbreaking in those days.

I felt isolated when my son was going through his difficult time and I really valued those friends who remained loyal and positive about him (even when I felt negative).

The good thing about my own son is that he seems to have an understanding of the anxieties that my friend's son is suffering and has been really sweet towards him. I am really proud of this quality in him, as a lot of children of his age would not be able to deal with this boy's behaviour.

I think I will get a few things here that my friend's son might like - Shrek 3 stuff or small toys (he likes rubbing small toys whilst he walks up and down). I can't ask him what sort of environment he likes as he really can't express himself that well, but trial and error will probably show what sort of place he finds most comfortable.

I have passed on all the messages to my friend and she is thinking of getting a wall chart to help him.

I'm so sorry that you know people that you feel unable to tell about your son's ASD. Are you really sure they wouldn't understand? Do you know anyone else with children with autism? It is not fair that you are so on edge and having to 'micromanage' him all the time so that people don't think badly of him.

The NAS can be a tremendous support to parents of children with autism. You may have been in contact with them already, but if not, I would recommend them. They do some helpful courses and have a helpline, as well as lots of booklets.

Anyway, your message really cheered me up. Thank you so much for taking the time to write it.