Looking for advice on ds. Sorry it's long

[blackteaplease]

Sorry this is a long one.

I'm posting here for advice on ds in the hope that some of you lovely mumsnetters will be able to help me.

I've had concerns about some of his behaviours since ds was around 3/4 and have periodically sought help but been batted away by school, GP and health visiting team. Most recently this was all attributed to covid anxiety by the GP with a direction to a local mental health website. Life is exhausting and I don't know how to find a way through this.

Background for context. I have 3 DC. Dd 10 and ds2 4 both NT. I work 4 days a week with a commute. Life is usually busy but quite structured.

Ds is a sensitive boy who doesn't like change. Anything unanticipated results in tantrums. He is very literal and if he feels something is not right he argues constantly.

He has vocal tics, currently he hoots at least 10 times a minute which he says he cant control. He also has physical tics including head nodding and blinking. He struggles to sit still. These have been going on for about a year. Maybe longer.

He gets very anxious about new things. At school for the first 2 years when I dropped him off he would cling on to me and have to be removed by a TA. This doesn't happen so much now, but we have to have at least 5 last cuddles. This doesn't happen with his dad.

His teachers all report that he is fine at school. No anxiety, very bright. Social with his friends.

He is a terrible sleeper and wakes at least once a night. He takes a very long time to get to sleep and can get very anxious at bedtime. At the start of lockdown he had what looked like a panic attack at bedtime. We now use a kids meditation app which helps but still takes a long time. I called the GP about that once which he said was covid stress.

He is very particular about food. He will not touch something new. Even if it is similar to something he likes. Sandwiches have to be eaten in clockwise order with one bite from each square at a time, placed carefully back on the plate.

I'm sure there is more but I will stop now. If you've managed to read this far and have any advice I'm listening.

Sorry. Missed out age when I edited. Ds is 7

This sounds very similar to my son with ASD who is 8. Only difference being that he also exhibits behaviours at school. Iirc one of the key things needed for a diagnosis is that the child exhibits behaviour in more than one setting - but it could be that he is masking very well there.

Sorry, the other difference is that my DS has pretty much no good friends. Sounds like anxiety could be the main issue for your son. OCD maybe? (Not diagnosing, just something to explore.)

Thanks for replying @KettlesReady I was thinking ASD but that was dismissed at 5 by the hv team as he is fine at school.

I just want to be taken seriously and get some strategies to help ds navigate life.

Are you looking for advice on how to deal with these behaviours, on pushing for a diagnosis or both?

I don’t think a hv is qualified to diagnosis autism but it is tricky when they present differently at home and school.

I would start by listing all of the difficulties he has and all the differences between him and his peers and the impact that these have on him. These might help narrow down whether the issue is ASD and whether to pursue that or more of an anxiety based issue. Either way, the approach to help him may be similar.

Autism primary manifests as social communication difficulties though obviously some individuals mask. Think about his interactions with others, is there anything unusual there? Is his behaviour different before or after play dates for instance? Is there evidence of him holding it together at school and then falling apart at home later?

If you feel there’s enough evidence then present it to your GP and ask for help. In the meantime there are plenty of ASD-type strategies to try but it really is trial and error to find something that works with your child.

@openupmyeagereyes both I guess. At the moment behaviour at school is ok but I am not sure how that will go as we progress through the years with greater expectations on behaviour.

For now, I'm looking for strategies for home life

He sounds quite similar to my ds age 8 who was recently diagnosed ASD. He also has tics and struggles to sleep. Relaxation app has helped a little but took some time to talk him into it.
'Fine' at school too according to Ed psych and teachers, and they suggested ds couldn't have autism. No massive problems at school but while they said he was 'social' he has no friends really, he plays alongside but doesn't interact really- the assessment team actually picked this up when they asked him questions about friendships- the school just have a superficial gaze I think- no trouble in the playground = all good.
He was also teary and clingy for a good year going into school in P2/3. Some things upset him at school and he explodes at home. He still doesn't speak to the teacher unless really pressed- they didn't see this as odd, they thought it was just him😳 I think if they are fairly academically able and 'behave' ASD could maybe be missed or dismissed by them.
HV can't diagnose either.
Could you try and see what impact structuring and planning his day with visual cues might have?
And see if you can identify any triggers for anxiety - which might be linked to the tics- anything new, transitions, unexpected changes in routine etc? If you can keep some of this written down it can come in useful if you decide to take your ds for assessment.

The biggest trigger recently has been coronavirus. His world has turned upside down in terms of regular routine and that has caused additional problems. But it has also made his behaviour more clear as between school, wraparound and clubs we don't spend that much time all together as a family.

I think I'll start keeping a diary of behaviours to see if I can work out triggers. I'll also work on a visual timetable. When he goes into year 3 in September hell go in a different entrance at school and there will be a greater homework requirement. I think well need to work up to that to try to reduce anxiety. School obviously haven't been able to have the usual end of term transition days and I can see the whole thing causing problems.

OP, I would push for a diagnosis and access to support now. He is "fine now" at school, what you don't want is his behaviours to be stuck and therefore more difficult to change when he is older. Especially these compulsive symptoms, like the eating, etc would become difficult to change when he gets older.

Thanks @buildingbridge. Whenever I've sought help before I don't think I have clearly set out the whole picture. I'm really observing now to compile a list of what's going on to go back to the GP with. I think also being fine at school is misleading, he's in a class of 30 rising to 33 in September. I reckon he is falling below the radar as he's not problematic for the teachers.