How to Cope with ASD DS When Out?

[LadyNym]

I don't go out very often due to not driving and being out in the middle of nowhere. Yesterday, I took DS1 to the GP and we were referred to the hospital (nothing serious - a cyst below his eye that's become infected and hasn't been helped by antibiotics).

DS1 is three (or will be in less than a week) and is being assessed for ASD, which runs heavily in my family on both sides. I also suspect he has SPD and PDA.

Both DSs had slept very badly the previous night, leaving all three of us exhausted. DH was at work but I don't drive so my mum took us to the hospital. I was prepared for some waiting around but between us arriving early in case DS1 got car sick, the GP being an hour out with the appointment time, some confusion between the receptionist and nurse over clinic times for a further appointment and the hospital pharmacy having a 40 minute waiting time we ended up spending close to two and a half hours total waiting around plus there was the actual appointment and getting there and back.

I had brought a bag of toys and a bag of snacks and drinks but DS1 wasn't the slightest bit interested in the toys and there were signs everywhere in the waiting room for the eye clinic stating no food or drink was allowed.

DS1 was tired and bored and anxious. I tried to entertain him and distract him but I ended up spending a lot of time holding him and restraining him so he wouldn't run off or lie down/roll around in the middle of corridors or grab things he couldn't have or climb on strangers and so the doctor could examine his eye. I ache all over today from the effort. I couldn't figure out why my shoulders, arms, neck and even legs were so sore until I realised that must be what it's from.

He's only three, I had my mum with me and DS2 is only a year old and it was so hard physically and mentally. How will I cope when DS1 is older/bigger, I'm by myself and DS2 (who I strongly suspect will also have ASD due to more and more traits emerging) is also bigger and perhaps having meltdowns??

I know I need to prepare better. I will think about starting a collection of toys that DS only has access to on these sorts of occasions. I don't know what to include, though? His attention span can be pretty short when we're out somewhere. Any suggestions?

Also, what else can I do? Either to avoid having to restrain him or to make restraining him easier?

I just feel so overwhelmed and daunted by the thought of the future right now. Any help/advice/support is welcome.

well, I would have walked up to a receptionist and demanded asked for somethere to eat as he has a disability and eating is probably less dangerous to their fixtures, fittings and the general public than a fill on meltdown. I would have asked for resonable adjustments due to disability. I would have spoken to the pharmacy and asked the waiting time and whether it would be possible to return in x minutes as dc has a disability and needs to go and walk before melt down.

you see I am a bit bolshy, especially when I am getting stressed because there is a lot of rumbling going on, I can see the signs and know I need to act fast.

next time I would ring ahead and arrange somehwere different to wait.quick appointment on the basis that waiting would exacerbate the disability.

but yes, the first time would have been a nightmare as I would not have known the difficulties... there probably would have been a melt down and I would have been standing in the waiting room rocking with a child who was kicking and screaming.

I also tend to complain about fluorescent lights that are annoying. when out and about just because.

This may help explain a little more. Generalising - When we're under fluorescent lighting in hospitals etc, it can make the whole scene look totally weird. And often we can see the lighting flickering. Then there's the overwhelming smells and noises of hospitals. Sooner or later our brain wiring overheats so much that we can't think or concentrate or know what's what. The suggestions above are just right. Investigate www.autism.org.uk/living-with-autism/out-and-about/my-hospital-passport.aspx which may be useful as well. It can tell the teams very quickly about sensory/routine/waiting needs.

Once we are able to wait somewhere away from the sensory/social nightmare, many of us can calm down and relax.

Thank you so much for all the replies. My concern about demanding too much for DS is the fact he doesn't have the DX yet. He's had an initial hour and a half appointment with a paed who agreed there was enough evidence for further appointments. He has an appointment in July with a child psychologist and I think he'll see one more HCP (probably speech and language therapist) before they all discuss whether a DX can be made (though, she warned me they rarely diagnose so young and will more likely agree there are traits and review in a year or two). Being right at the beginning of the diagnostic process makes me feel like a fraud if I tell people he has ASD even though I know he does.

I have seen enough from the family members with ASD, read up enough and it runs so heavily in our family that I absolutely know (plus, my mum who read umpteen books and web pages on ASD when my sister got her DX, has four kids with one on the spectrum, is married to someone on the spectrum (though, Dad's undiagnosed), and has worked with young kids as both a childminder and running a playgroup is absolutely certain) I don't feel I can say it for fear of being called a liar.

Waiting rooms are perfect places to introduce gadgets in my humble opinion. A tablet or an ipad with some favoured tv programs, films or games on can keep even the livliest of souls quiet busy for half an hour or so. More as they get older.

We feed snacks and drinks when and wherever Dd3 needs them too as ignoring these needs is the quickest way to set her off!

This will get easier, learn what works for you and do that. Parent your boys in the way that they need you to, this will not necessarily be what you thought parenting was going to be like but it will make yours and your boys life less stressful.

Good luck

Try those Though of course they are only showing how I see things when in sensory/social stress. Others may see the scene like a kaleidoscope, or in grey tones, or fuzzy. And it doesn't show the sounds or smells and how intense those are.

Yup. My photos.

Hmm. Interestingly, I can very much relate to these photos. Not to the same extent but I often find certain lighting does really funny things to my eyes (to the point where it's a recurring theme in dreams for me) and I often find myself squinting when nobody else seems to be struggling.

Then again, I know I have many ASD traits even if I'm not actually on the spectrum.

Thank you to everyone who has replied. I have tried to be proactive and spent yesterday morning making a few things to keep DS entertained on Monday (his next appointment). I made one of those 'eye spy jars' I've seen online, put together a little colouring/sticker pack, filled a balloon with playdough for a fiddle toy and found a few of my sisters' old books DS hasn't seen before. I'll also download a couple of kid's games on my phone. And I'll psych myself up for asking for a separate room etc. if it looks like a long wait again.

It's DS's birthday this weekend so he'll probably have new toys that will still be exciting I can take, too.

Any other suggestions are welcome.

Also, I have heard of toddlers younger than DS being diagnosed before but it does seem to vary depending on area. I'd love for him to get his DX as soon as possible because the preschool he's going to go to after the summer seem really keen to put support in place for him and say they'll be even more able to if he has an official DX so they can apply for funding. I have no idea how he's likely to cope with preschool so it may well be that he does need special support and it would be good to have the option of extra funding if it's needed.

I hate that sort of response. As if not dx'ing ASD stops the child from having it!? In fact, I wrote a blog post about whether I was 'labelling' DS by trying to get him dx'd recently because I was so sick of that stance.

I'm hoping the fact his next appointment is with the child psychologist who dx'd my sister will stand in our favour!

My son has not got a formal diagnosis. I tell people who need to know that he has probably got ASD, and the paediatrician was happy to write that he should be treated 'as if' he has autism.

Hi LadyNym, my DS (with speech, sensory, anxiety problems) hated going anywhere new and also hated waiting, so we had many stressful hospital appointments (he has a lot of different ones due to assorted physical disorders). Waiting made him have meltdowns, and by the time we saw the relevant medic, he wouldn't comply or be tested, and I was in bits having waited for months for the appointment. I came up with two requests: 1/ Can we have the first appointment, or the last one - anything to minimise waiting time? 2/ in order to have a productive appointment with a new clinic, can we come in a week/few days before just to see waiting area and the room we are going to be seen in? We'd like to quickly say hello to medic and then happily say goodbye and leave.
That way the rooms and person were familiar when we went for the real appointment and he remembered also that it didn't last forever. I had a few grumbles from appointment staff about time wasting but would argue that a 'practice visit' saved NHS money because it meant that he would be calm for the actual appointment and it would be productive. It works, that and lots of toys, small snacks and screen time. Good luck too with the diagnostic process…