What would you do?

[birdynumnums]

My DS1 age 5 is currently being watched by the educational psychiatrist. They are suspecting autism because of his lack of concentration, his poor social skills and other factors. No diagnosis as yet and they feel it is very borderline at the moment. He still can't write his name after a year at school which is a massive concern to me although he is a summer baby. They are not prepared to look at him again until 6 months into his new class. The school pushed for this assessment - not us. DP adamant there is nothing wrong with him.

However, over the 6 weeks holiday things have got worse. We have always been able to enjoy time away at the seaside. He has always loved the arcades and other busy places. Literally, in this school holiday he has developed a phobia of them for no apparent reason. He starts screaming and tugging at us to leave. When asked why later, he says it was because they were 'scary' and 'noisy'. He is also suddenly completely unwilling to go on any fairground rides despite previously enjoying them.

Problem is we have DS2 age 3. He loves doing these things and has has really suffered because of DS1 this summer because we are always having to leave. He got all excited because I took them to a water park. DS1 kicked off because he didn't want to go in the pool (despite the fact that he goes to swimming classes every week) and we had to leave before he got in the water. Maybe we are in denial but we have tried telling Ds1 he is being silly and ruining the trip for everyone else. We have even told him that he can stay at home with his nan next time we go out (he said he was sorry and that he won't do it again but he did it at the next place we went to). I am sat here now thinking this was very cruel to him if he is autistic but at the same time, it's not fair for his brother who has barely been able to anything fun all summer.

DS's sensory issues are always much more acute during growth spurts. Just wondering if this could be a factor?

Ok if I am reading right the school have raised concerns, the EP has visited and its the EP that wont see him again for 6 months?

How does the school feel about this? would they be willing to have a home/school book started to help you and them?

Maybe start a diary/log of events such as the holiday time issues.

These can help you form a picture of triggers of anxiety and also are good to hand over to professionals during assessment.

Have you considered visiting your GP and asking to be referred to a developmental peadiatrician?

I dont think you are in denial from reading I would say that you accept there are issues that need addressing but just not aware if just how much or how little :)

He could be just immature and just not ready to knuckle down and prefer play at the moment and its about now that issues become more pronounced as our children mix with peers their own age so it is good that you have a school that raises concerns so quickly.

From what you have written here I would look down the sensory processing route and perhaps a self referral to an Occupational Therapist trained in sensory awareness. The out of sync child is a good read.

Your story really resonated with me as ds had v similar reactions to things when he was younger. He is also autistic. I think it is probably related to his sensory needs and perhaps also to his need for things to be the same. You could try preparing him for new places with pictures and discussion about what he will see and hear there. This might help but tbh we have just ad to adapt what we do with ds. On the plus side he has improved as he got older and we recently took him to the seaside for a week where he managed really well. This stage is often the hardest I think. Even if you don't get a diagnosis you may find that some of the strategies used with children with autism might help your ds anyway.

EP cannot make any diagnosis; this person can help only with additional educational needs.

I would ask your GP for a referral as well to a developmental paediatrician; this type of person can diagnose. I would also suggest your son sees an occupational therapist as well.

Exactly what Attila suggested.

Don't rely on school / Ed Pysch. He needs to be assessed by a developmental paediatrician.

I'm so sorry but EPs do not visit children in schools for suspected 'borderline' children. There has to be real concerns and then some.

I would ask for a referral to a developmental paediatrician, with your list of holiday-ruining behaviours and anything else that concerns you. You need a complete and accurate picture of what is going on, so that you can address his needs appropriately without being unfair on him and in order to ensure he is properly supported in school.

You don't sound in denial. You sound worried. DP's are often daft around the whole dx thing like it affects their virility or something but he'll get over it. He'll have to, assuming he, like you want the best chance at helping your child access his education and develop to the best of his ability into a functioning adult.

Thank you so much for all your replies. Very helpful. He got discharged from occupational therapy but he still has issues that have not been addressed. Were in touch with child development before but I never thought they were any help. Will contact my GP to ask to be referred again.

hi there just de lurking to also suggest, as a very kind person did with me when DS was going through the assessment phase and we were dealing with issues...visual prompts and schedules for trips out/anything difficult.

Just photos of the place you are going, inside and out and if you think there may be difficulties perhaps a motivator at the end (ice cream after swimming if he doesn't shout in the pool etc). I used to have laminated pictures with velcro and just a word underneath. Now that DS can read, I do a more "story" type A4 sheet.

I was sceptical when it was suggested: but it does seem to help (not always, but sometimes brilliantly).

All my kids quite like these now and two of them are NT...the littest one has been saying "first X, then Y" for trips etc since he could talk. Hope that is of some help in the interim.

They are not, as some professionals seem to imply, a magic wand but they can help reduce anxieties to a manageable level and are easy to do.

Thanks LouLou, the school do that with him. Might start it with trips out. That's a good idea.

I find looking at where we are visiting on the internet helps my DS - gotta love google! He loves computers and so it's a way to get him involved in searching up where we are going, looking for himself at what is there and what he wants to do there. Then we write it down. I find with DS he has to do the thing he wants after arrival and then can do other stuff with the promise of reward - eg chips at lunch for walking with me. I also use the what I want him to do "walk with mummy" rather than "no chips if you run off". Also DS loves maps and so we print off a map if a park type place and a google map of where it is and how to get there.
I find doing a visual timetable of the day doesn't work with DS unless he knows/ has seen what it physically is. Once we've been somewhere and re visit he generally is OK, we now can use verbal reminders of behaviour (x) gets reward (y).

DS has similar issues with new places / noisy places etc. TBH we end up as two families - one parent with DS1 and DS2 and one with DS3 (autism). We do persevere with DS3 and keep exposing him to situations and often once he gets over the newness of it he does come round but it takes time. 2 years ago DS refused to go on the beach at all (he didn't like the feel of the sand disappearing beneath him as he was ok on wet firm sand but not the dry sand). 1 year ago he would go on the sand but not go near the sea (waves too noisy). This year he loved both. He has a tendency to develop rituals wherever he goes and wanders off so he needs an adult just with him and then the other children need a different adult. At weekends we get a few hours of direct payments for a carer via social services disabled childrens team so we can do activities with DS1 and DS2 without DS3. There is also no predicting how things will go at new places eg DS1 and DS2 were desperate to go to alton towers so we took them all last year. We didnt expect DS3 to go on anything but thought he would be happy in his buggy / running around. What we could not have predicted is that despite never having a problem with noise he hated the sound of the rollercoasters on the rails and the people screaming and spent the whole day with his hands over his ears and carried on being hyper sensitive to noise for weeks after. This summer we decided not to take DS3 on the expensive water / theme park outings and one parent took the other boys which was a lot less stress all round.