To be scared for my autistic child - or will it be ok?

[LanaL]

Feeling really scared . I don’t know if I’m overreacting . My son is 18 , autistic , attends a SEN college . He has always had transport provided in the form of a taxi . This year he hasn’t been awarded it . I am appealing but it’s highly unlikely he will get it as they have had an overhaul of the policy and there are physically disabled children being refused .

I simply cannot afford to pay privately ( been quoted £500 per week ) . I can’t take him either as I work and I would have to give up work completely . The college is 10 miles away from us , he has to get a bus from where we live to the busy city centre and then a bus out of the city centre to college . It will take him an hour and a half on average .

He is ok with roads , mostly. He is sensible and will cross at crossings etc , but recently he went to the local shop and a car came around the corner quickly he said and it had to slam his breaks on . I also worry that he will panic and run for buses and forget safety - admittedly this has not happened . He can be prone to meltdowns at home , where he will scream , cry and hit himself . However , it is only at home he does that . He is a clever boy , he has an immaturity about him socially but he is also desperate for freedom so looking forward to travelling independently… I have no worries about him getting lost or anything g like that - he knows bus / train routes better than most as he hyper focuses on them and I do think in an ideal world of quiet roads etc he could manage the journey no problem . My worry is other people - cars driving crazily , groups of teens targeting him .. I don’t know how he would deal with that . He says he would just run away but I worry he would be drawn in to conversation or be easily manipulated or that he might not outwardly present as having special needs so people could think he is rude ( sometimes he goes a bit too close to people , might not realise there is a queue etc ) .

He does go out on journies on the bus and he manages fine - but this is when I am available , he is being tracked, he is not on a time limit ( going to college he will be worrying about being late ) and usually it’s on a Sunday when it’s quiet .

Im just going out of my mind and I feel very scared . Everyone around me tells me I have to let go and give him freedom and this will be good for him but the thought of him being out in the city , whilst I’m uncontactable at work fills me with fear !

His dad drives , and drives within the city so has said if he had a call that he was distressed he would get to him asap … but I’m so scared 😩 the only other option is him not going to college and that isn’t fair on him 😔

Has he had travel training? If not then I would try my best to insist he has a taxi at least until travel training has been completed.

No he hasn’t . I’m doing more than insisting , I am appealing and I’m on my second appeal but I have pretty much been told that the decision won’t be changed. Numerous parents are in the same position and they are all being refused . He goes back to college in a week .

He's entitled to travel training and he should be properly assessed to see if it's safe for him to travel unaccompanied. If hes deemed safe then they will withdraw transport but only after the first 2 points.

Many if not most people with autism can use public transport, it just takes lots of practice sometimes

I'm a SEN post 16 teacher and a good percentage of our students transition to independent travel by the time they leave us at 19

It is incredibly nerve wracking for parents but the level of independence you describe would mean transport would be refused in our area and there would be no option to privately fund -public transport would be the expectation the neighbouring authority however everyone pays at post 16 so it's an absolute postcode lottery

It's really hard when a young person hasn't experienced independent travel to know how they would react when something goes wrong -even if they can say what they will do following through on the moment can be hard
Others surprise you with how well they manage -we had one student who got off at the wrong stop and didn't know how to get to college, but they did know how to get to the park and then from the park to college -so that's what they did

They best thing you can do is make sure he knows what the emergency plan is -ring dad, ring college (we would go collect a student if needed) and speak to college about their process to reassure you -we ring parents by 9,20 if students haven't arrived

They haven’t awarded transport , this is the thing and I’ve pretty much been told that they won’t . There is travel training available that I have applied to , but there is a very long wait . I have repeatedly emailed the council explaining my concerns and that it is unsafe and they have said that it’s my responsibility to take him and my work has no impact on their decison. They are completely neglecting responsibility. I have a friend with a 17 year old who is non verbal , wheelchair bound , tube fed and extremely low mental capacity and they have been awarded a bus pass and had 2 appeals denied .

If he goes out for journeys on the bus at other times then he may be able to manage it.

If the other option is paying 500 a week...

You can still track him. So can his dad. If his dad is prepared to pick him up if there are any problems that is a bonus.

Does he have a mobile phone?

You can buy him a sunflower lanyard, lots of people use them on trains (not sure about buses because I am physically disabled and buses and wheelchairs don't mix well).

You can also buy cards that he can use to hand to people if he is struggling. stickmancommunications.co.uk/product/autism-pack/

He does have a phone , yes.

He practiced the journey alone today - at the same time he would go , but schools aren’t back yet so it was quieter than usual. He did great - that is a relief . Luckily , the bus stops change soon so he won’t have a road to cross in the city centre , as it stands he does .

Me and his dad are at a bit of a stalemate about the sunflower lanyard - he does have one but his dad worries that it could make him a target , or make him more vulnerable . I did disagree , but it has made me think . I have made him a card with details on and explaining his condition for him to go into a shop and give to someone if he feels unsafe

Thank you , this is reassuring . I’m so scared and I don’t think he’s ready - himself he is , but I mean his social skills etc I just really worry about gangs of kids targeting him …. But that could well be me overreacting.

I really don’t have a choice . They may offer a PTB but I’ve worked that out at £160 per month ( I could be way off ) and I had a quote for a taxi - £500 per week ( even though the fare is £15 per journey , they charge £50 per journey if we want it guaranteed . Horrendous , the PTB won’t touch it .

I am so worried 😟

Surely it's a good thing if he manages this independently (
and by the sound of it he has)
Only other thing i can think of is of he could travel with any other students?

Mine is 18 too and soon having to do journeys alone to work OP, it is scary! I agree with a pp who said make sure he knows what to do if things go wrong. Mine had a bit of a meltdown on a bus home from school once because he'd got on the wrong one and it was going in the opposite direction to the one he needed (same bus stop and similar times for both directions). He managed to speak to the driver and then phone me but he was extremely upset by it. I kept reminding him that he handled it really well and did all the right things and that sometimes things do go wrong but it really threw him.

I don’t have contact with any other parents , but I have emailed the college and asked about this , it’s a good idea , thank you .

Thank you for sharing . Bless your son! It’s positive to hear that he managed to ask for help and that help was given ! It’s very scary isn’t it

He has managed the journey, that’s great and focus on that. Can he practice a few more times before his term date starts again?

Really it sounds more the worry that a load of teens will pick on him more than he can actually manage the journey and your DH being available in an emergency sounds great.

I used to work in an arena where I had contact with young adults with additional needs and disabilities. This was at a University in a support service. I have also been friends with two women whose children were diagnosed with autism and they had very different approaches to how they parented. As much as you have fear and it’s always going to be a bit harder than having a child without additional needs how you parent now as they become an adult will have a big impact on their future self, as does any parent regardless of additional needs.

As much independence as possible is great for any young person. Of the women I knew one remained a helicopter parent and her child has just never ever been allowed to have any sort of independence at all. It was not for me to intervene as not my child but it did him no favours.

I know you made him a card and that was a great idea but there is also the DID National disabled card and the national disability card. Maybe have a look in to these.

The standing too close to people, I would practice with him at home as to what is an ok distance to stand next to people and how to move forward safely in a queue.

You got this Mum.