Possible dyspraxia but confused about other features/traits DS may have

[linohead]

Hi everyone,

This is my first post on Mumsnet so please be gentle with me, and apologies if I'm not posting this in the correct place! I will also apologise in advance for the length of this post......here goes....

My son is an August birthday and started school in September, just after turning 4. His reception class teacher was quick to raise some issues with his fine motor skills - struggling to thread string through a hole, struggling to form letters, difficulty turning pages, unable to do up zips or buttons.....Some of this I was aware of but I've always brushed it off, telling myself he is young for his year and a lazy boy who would rather get others to do things for him that do it himself....She also mentioned that he seems to get hung up on tiny details, so for example if she is reading a story he will zone in on a tiny irrelevant detail in the picture and ask multiple questions about it...

His teacher suggested getting his eyes tested which we promptly did; it turns out he is markedly longsighted in his left eye, mildly so in his right eye. The optician who saw him had some occupational therapy experience and highlighted some issues with his eye tracking and switching his gaze from one object to another. She also noted his fidgeting/restlessness and suggested attention could be a problem for him. She felt it was likely he struggles with fine and gross motor skills and advised getting a referral to pediatrics via the GP.

I've seen the GP and the referral has been made. DS has an appt on 12th March with a consultant.

I feel like I'm stuck in the midst of trying to piece together a puzzle and spend time mulling all of this over every day, feeling quite guilty about it all. My son was late to do most things; he was late rolling as a baby, he didn't wean properly until he was 9 months as everything made him gag and wretch, he was always reluctant to weight bare through his legs and would lift his legs high up rather than stand on them (his little sister is now 6 months and has started to do this, reminding me that DS never really did). He didn't crawl until he was 13 months, didn't walk until 20 months - the health visitor was never overly concerned and neither was I really as we are a family of late walkers... He has always fallen over a lot, still looks very unsteady going downstairs, struggles to eat with a knife and fork, preferring a spoon. Thinking back, I think he has avoided playing with certain toys such as puzzles due to issues manipulating the pieces. From what I've read a lot of this fits with dyspraxia but I'm concerned there are other aspects that I cannot explain. Some of these are:

• DS is very repetitive. I know all children of this age can be, but even his teacher mentioned this to me as appearing rather to the extreme. He will ask the same question over and over, and seems to get fixated on certain details. This tends to be particularly pronounced about journeys in the car or the daily routine. For example, in the car he will ask multiple times if we are going on the motorway and, once on the motorway, he will want to know if we are still on it, what the other cars are doing, whether we have moved onto a dual carriageway or not. He seems to understand the responses given to him as he can often repeat back to you what you have said but he will continue to go over and over the details. He also gets confused over the concepts of today or tomorrow. Each evening he will ask me 'is it school today' and I will tell him he has been to school already, it is now bedtime, and it will be school again tomorrow'. Again he will ask if its school today and we go round and round in circles....it is puzzling as at other times he demonstrates a really good memory and understanding. He is currently unwell and he was able to tell me tonight that I should only give him one syringe (5ml) of calprofen, as he knows he can have two of calpol!

• he is very quickly frustrated and his mood can change very quickly. He can wake up bright and breezy and then the smallest thing can cause a complete change in his demeanour. He can be extremely emotional; we watched Frozen for the first time the other week and when one of the characters turned out to be a 'baddy' rather than a 'goody' DS sobbed his heart out and flew into a rage with me, shouting 'I'm so angry with you!!!!' over and over - it took him some time to calm down and re-enter the room.

• he loves being with other children and his teacher noted that he socialises appropriately with his age group. He appears to be well liked, although the way he interacts can sometimes be a little strange to my mind....but, then, that's 4 year olds for you! However, he is very wary of adults at times, even his own extended family. He sees my parents about once a month and generally will not say hello or bye to them and is very selective about how he engages with them. Basically it has to be on his terms; its fine if he initiates the interaction but, if not, he often won't cooperate, will blank them and has been known to growl at them! He is very slow to warm up with people. His teacher noticed this and, whilst he is better with her now, he is still reluctant to talk to her or engage with her at times.

• his behaviour at school is reportedly great. He falls in line and does what he is asked to do. At home it is a different story. Whilst he isn't necessarily badly behaved a lot of his behaviours are very controlling, he is pedantic/hugely particular about how things are done, very sensitive and, as mentioned, very emotional.

• Lastly, I promise, he requires 1:1 attention constantly. Again, I appreciate this may not sound unusual for his age group. DS will not play on his own at all when at home. If no one is playing with him he will sit and suck his thumb or will watch television whilst intermittently repeatedly asking who is going to play with him. He will not stay in a room on his own, following me or my husband around the house. If we are engaged in other activities such as cooking or laying the table he will play up, messing up whatever it is we are doing to draw our attention onto him, or will try and climb onto our laps if we are sitting down.

I could go on and on (I already have) but I just wondered if any of this sounds familiar to you? I have queried ASD but the sociable nature doesnt seem to fit with this, he also has good eye contact, seems to understand his own emotions and the emotions of others, can play imaginatively....I'm just so puzzled by him and worried about him really as I know some of our friends and family find him peculiar/quirky. This only bothers me because I worry about things being difficult for him in school as he gets older....

Any thoughts or insights would be hugely appreciated and thanks SO MUCH for reading this mammoth essay xxx

It sounds to me like he is very anxious, particularly where your describe him being controlling and asking questions repeatedly.

Have you read anything on sensory processing disorders? 'The out of sync child' and 'raising a sensory smart child' are good places to start. Having sensory issues can cause a lot of anxiety. I would definitely get the consultant to refer you to an OT, particularly one who specialises in sensory integration.

Something that might help you and him is using visual supports. So when you are in the car you could show him pictures of where you are going, or the activity you are going to do when you arrive, I know some people who use google maps to show their children what journey they are going to take to get somewhere. Do the school use a visual timetable, that could be helpful for him too.

Maybe at the moment, with things like Frozen, he need a bit of forewarning that something. Like that is going to happen so he can prepare himself.

It's good you have been referred to a development paediatrician.
And with not too long to wait for appt (although I'm sure it feels like a long time to you).

Autistic children (people) can absolutely be sociable - my ASD DS love company and friends. He also really struggles to be on his own / occupy himself.

Agree the questions are seeking reassurance. Maybe try visuals for him (eg on car journeys write the route down for him, with approx times. My DS loves looking at Sat Nav because it takes the anxiety of unknown length of time out for him).

Basically any pre-warning you can do will help (eg this movie has a bad guy that pretends to be a good guy. Shall we see if we can work out who it is. Obviously only works if you have seen the movie first).

He sounds lovely btw.

Oh haha should have read liv's reply more closely as I see she said the same as me 👍

DD1 can be quite controlling and like to know exactly what's going to happen when - she is very very much an anxious type of person and it's her way of controlling that anxiety. We just try to work around it.

DD2 is out and out dyspraxic and we get things like the fidgeting and restlessness as a result of that - she likes to know what's what and try to organise people but that's just her being a typical 5 year old really! Just prepare for so many bump letters you could wallpaper your house with them!

Liv's advice is excellent. We had sensory integration therapy and the degree of anxiety really fell. Family members kept commenting on it who didn't know about the therapy. Essentially because if you have a poor sense of where you physically are in the world, everything is harder and more frightening.

We have a week ahead planner on the wall at home, and then big planners for the holidays, so everyone can see what is happening today and tomorrow.

As to whether your child is autistic, I have a sociable, affectionate autistic child, who engages in imaginative play, and autism is a truly a very large spectrum.

Having said that, my NT 5 year old would really struggle to watch Frozen or any film because they are generally very upsetting at some point. My kids do not want to watch any films because of that! And equally he is constantly looking for playdates and someone to play with. So very similar!

Asking the same question can be very reassuring as you know what the answer will be. Is he worried about going on motorways? I bloody am, so that's not weird!

MY DN has ASD and controlling her environment is one way that she copes with life/ at school where she cannot keep up with games/ social interactions/ conversations with others. For this reason she is often seen as being bossy and inflexible.

Firstly, please don't feel guilty OP - you're doing all the right things. Starting off the diagnostic process is absolutely pants.
My DS (ASD dx) is very sociable, but due to anxiety surrounding sensory issues can occasionally be quite controlling of his environment (this has become easier to manage as he's got older). I believe there is sometimes some overlap between dyspraxia symptoms and ASD traits. For example, a friend's DS has dyspraxia, but also has social communication difficulties. When my friend asked her EP about ASD she was told firmly that he is not on the spectrum.

Wave of solidarity from me as I am in such a similar boat just maybe a little further down the line as DS is in year 1. our world tipped upside down when he started school as the challenges of sensory overload and keeping up at school got too much and he was having almighty meltdowns at home each day. I have been obsessing and worrying and reading constantly. Hugs to you x
It has been a rough ride but if any of my nuggets learned along the way might help I will happily share..

I second the Out of Synch Child - great starting point as soooo many kids are affected by sensory processing problems and these play a big part in autism/dyspraxia/adhd etc. We now do lots of sensory play (which for DS he benefits most from crazy roughhousing before and after school so he gets lots of body contact) and this helps with his anxiety as it enables him to regulate his emotions - might sound bizarre but it really helps. Do read the book x

I have also learned how much these conditions overlap and it’s very common to have one and traits of the others, or to have several diagnoses. I never felt DS fit with autism but felt dyspraxia (developmental coordination disorder) fitted him - especially when I learned that it’s xommon to show autism traits as part of dyspraxia/DCD. That made sense to me. But this year DS seems to be more noticeably showing autism traits (he’s now 6). He is under community Paediatrics to consider DCD and CAMHS to consider autism.. CAMHS did a preliminary assessment of him and said he shows traits but it’s not clear cut so we are waiting for full assessment.. the child psych said if it is autism his difficulties will become more noticeable as social challenges become harder to navigate. This certainly makes sense now..

In our area everything seems quite fragmented in terms of assessments and there is a different avenue for each of the key areas so I worry we will fall through the cracks and no one is looking at DS as a whole. So a year after we started assessments & referrals we are now looking to see a private neurodevelopmental paediatrician who will consider autism, dyspraxia, adhd etc all in one go. We have a similar problem that DS “masks” (google it if not familiar - useful thing to know about) at school and so school do not see his struggles. He is a happy, compliant, eager to learn little boy at school and a raging, controlling, angry monster at home.

We too have found picture plans make a huge difference - school holidays can be very hard as all routine and familiarity goes out the window so I do pictures of what we will do each day. And the questions too- i find the questions increase (and repeat) with anxiety. Also have trouble with grandparents visiting the house which is so sad. Whatever you can do to reduce anxiety helps so talking, plans, routine, giving him choices, showing him you understand his worries etc. We got some good books about worries from the library which helped normalise it. Ultimately if a child is slightly neurodiverse and they process the world even slightly differently, this will make them feel anxiety more than a neurotypical child. This is what the child psychologist said to us at initial assessment and it’s so true. Everything is overwhelming if you’re not in control of your body/brain.

I am right here with you lino x

Wow. Just wow. So touched and amazed that I've had so many responses. I wasn't sure if anyone would respond....how wrong I was. Thanks so much for the understanding, reassurance and advice. It really does make a difference as I feel pretty at sea with it all at the moment.

I absolutely think sensory processing is an issue for DS - he is extremely sensitive to noise, temperature, taste and smell, and if he is sat next to you he struggles not to touch/pinch/tickle/punch (on a bad day!) you. He tends to put his mouth on people/objects a lot aswell...... If he does not like the taste/smell/texture/noise of something he finds it completely intolerable and there is absolutely no talking him round. I will definitely purchase the out of sync child since a couple of you have recommended that.

Also the information about forewarning and preparing for the day ahead with pictures - I definitely think this could really help him. Reading back what I have written, you are all right - it does sound like he experiences quite bad anxiety and gains some reassurance/soothing from repeating the same questions over and over.

Triotribulations - its lovely to hear from someone going through the same process, I have gained a lot from hearing about your experience. I don't yet know whether services here will be divided in a similar way....hopefully not as, like you say, you can't really treat each issue/diagnosis as separate.....they are all so intertwined. I'm definitely going to read up about masking - this could not be more true of DS. He very much tows the line at school and seems to do a good job of being sociable and 'appropriate'. The moment he claps eyes on me at the school gate this can all fall apart in a heart beat and he can quickly become mysteriously angry, non-cooperative and sometimes non-verbal. It can be really crushing to be on the receiving end of so much anger and frustration when i haven't seen him all day and am looking forward to collecting him from school.

Is there a forum to chat more to people about some of these issues? I cannot state enough how much this thread has helped me to make sense of what is going on and to feel a little better about the challenges we are faced with. Thanks very much to all of you again xxx