DS (8) Dyspraxic, now ?ASC/ASD as well (only mentioned as a possibility at the moment)

[LRB978]

Am a long time lurker, very occasional poster, this is really just a ramble, trying to get thoughts clear in my head, but I need to speak to someone. If you manage to get to the end, thankyou for reading it, because essay doesn't begin to cover it.

One question I do have, before starting, is is it possible to claim dla for a child with dyspraxia? Has anyone successfully managed this?

Ds 8 was diagnosed with Dyspraxia last October, although it was first mentioned as a very likely possibility this time last year (and I became convinced as soon as I researched it). He's had some 1-1 OT for sensory seeking, and is having more (based within school this time) after the holidays.

Today I had an end of year meeting with the SENCo, looking ahead to next year, provisions being put in place with his change of teacher, going into yr 4 etc. As a result of some of the things I mentioned, she is going to put him forward for SALT input (he can struggle to answer questions, doesn't always understand what people are asking him), but also asked if I had considered the possibility of ASD/ASC. It has thrown me for six. I felt like we were really getting a handle on his issues, getting the support in place for him (and all credit to the school, they support the children's needs, regardless of diagnosis (or lack of)), I felt like we were getting there. And now this. I know rationally that Dyspraxia is rarely the only diagnosis for a child, but I wasn't expecting ASD/ASC to be suggested. As his SENCo said, the OT has started to help his dyspraxic tendancies, so we are now seeing issues that were previously hidden, and as he is getting older his social differences are becoming more marked, but are some of his quirks really ASD/ASC in nature?

In my heart of hearts, I have known he has autistic traits, although if he is I suspect he will be very high functioning/mild Aspergers (then again I didnt think he was that badly affected by his dyspraxia, but his report came back putting him in the bottom 5% of children assessed for some of the items, and even the bottom 0.5% of others)

I know this is a ramble and a half, probably doesn't make a lot of sense. I think hearing someone suggest something that I have had at the back of my mind for a while, has made seem a real possibility.

And if he is, what then? I know it wont change who he is, just add another label for when he gets to senior school, and hopefully another layer of help for him, but what about everything else? His social skills are already on a par with a much younger child, how bigger is the gap going to get? How will I persuade my mum that yes, he is ASD/ASC? (How will I even broach the fact that they are going to be assessing him for it?)

And even if it isnt ASD/ASC, why are his social skills so far behind? Is it just the dyspraxia, making it difficult for him to work out how he should behave with his peers?
And his love of repetition, his need for routine etc, are they really all just his dyspraxia?

To top it off, I suspect he has dyslexic tendancies as well, but that I will sort another day.

Have another meeting with SENCo in the new term to discuss putting him forward for CAMHS, she is going to send in a request for SALT to assess him, am going to keep a log over the holidays of social interactions that aren't quite right (and will get his holiday club/daycare to watch for this as well).

A ramble as I said, and I don't know what I want in return, but maybe, just maybe, someone has been here. Can tell me labels don't matter (my head knows they don't, my heart is a different matter). Am trying to focus on the positives of the year, he has had a really good year (for him at least), but am struggling to get past the fact that someone else has vocalised a thought I have been hiding (even from myself), telling myself its just the dyspraxia.

Labels don't matter ,it wont change your DS, he will still be the same DS.

My dd1 is 6 and has a dx of Aspergers, i believe she also has Dyspraxia (but getting a dx is proving difficult).

ASD and Dyspraxia have so many similar traits, could it be that your ds's school has more experience of ASD then they do dyspraxia? they may only be seeing the traits that are similar to ASD. The repititon and need for routine can often be dyspraxia traits as well as ASD traits.

Just remember the SENCO is not a pead, they may know a little about sn's but its not their job to diagnose. Speak to your ds's pead or GP and don't panic, you know your DS best.

Write a list of all his dyspraxic traits and all his ASD traits (things look clearer on paper), if you feel he has more than a couple ASD traits then talk to his GP about your worries.

People have mentioned all sorts of conditions to me regarding my dd's and it does worry me but i tend to only listen to people who know what they are on about now (GP's, Peads).

justabout - thank you I have been struggling with the word routine for ages and now I know why. It isn't routine but structure he needs. As long as he knows what is happening he is fine, even if it is different day to day. He just gets upset if that structure is changed at short/no notice.
The DLA thingy - I am slowly getting a list of his needs together, will probably post a separate thread asking if ppl think it's worth going for, with his needs.
I know Dyspraxia often goes hand in hand with both ASD and dyslexia, I just hadn't admitted to myself it could be with him, hearing someone else say it may be forced me to look at what I was hiding from myself.

Marne - I know that labels won't and can't change my quirky boy, but at the same time the thought of ds possibly being labelled ASD is a bit hard to take in (to put into context, I used to work with children with severe autism, and it's accepting that ASD doesn't always equal the severity I worked with)
The school is brilliant, and work with the child's needs, so don't need labels to match with traits IYSWIM. They used to have a special school located next door, had strong links with that school, still have dedicated spaces on roll for children with quite severe physical needs, and take in a high percentage of children on SA, SA+ and with statements. However, because of this, they are also quite good at matching traits with possible diagnoses, but as you say can't and won't attempt to dx a child, will however help the parent in any way they can to get the right dx.
The SENCo raised the possibility of maybe, have I considered the chance that he could be ASD after I mentioned some other things I had noticed about ds recently - as she said it could be that OT has helped with some of his dyspraxic tendancies so they are not masking the issues I am now noticing, it could be as he is growing older they are more noticable (it could also be that I am now spending time with children of his age and am therefore seeing things I didn't before, as he is my only).
Listing his different tendancies and splitting them into ASD/Dyspraxia/? is a really good idea, and I will do that. School are happy to refer to CAMHS, and the peadiatrician who diagnosed his dyspraxia said that if I still had concerns after he had had OT to feel free to go back to her, so I may see if she will see us again as well (without going via GP).

Thank you, both of you, for reading and replying to me.

Somebody with an ASD diagnosis is just somebody whose ASD traits make life difficult enough for them to need additional help. An ASD diagnosis gives a subjective view of a child now - it can't predict their future.

I think it is very difficult to tell where one diagnosis ends and another begins. I think the point is more whether your DS needs help for his ASD like traits, not whether he is or isn't 'autistic'. I also get the impression that, at least in my area, there is more funding for social communication diffculties than there is for dyspraxic problems. I think that if a child did need help socially, but only had a dyspraxia diagnosis, they might not fall into the right funding box to get support.

Thank you merrymouse, that really helps me - you have put in words what I know but had forgotten, that it isn't so much the dx, as the support he will get for the dx. As you pointed out, rightly or wrongly there is different funding and support available for different dx's.

And that is part of the reason to get him dx'd with whatever is relevant, not for his schooling now (as I have said, his school is great) but for his schooling in just over three years, when he goes to secondary school.

Hi LRB

firstly let me pass you a cuppa and tell you it really will be okay.
Ds2 was first dx with dyspraxia ( mild), then a bit later dyslexia on top of that.. Then by year 4 the whole asc bit really started to show up... And yup he's got that as well.
However.. With the right help he has managed to stay in mainstream school, just got his SATS results which were all well above level 4 apart from spelling and writing bit.

That's the really good bit about getting a label.. It's allowing access for your dc to achieve what they are capable of.. Rather than miss out on an education.

With regard to telling him about being tested.. Well what worked for us was to explain it ina way that likened his social, communication, issues along the lines of what he already knew he had.. And already knew that although it took extra work and effort on his part.. It wasn't going to be a huge issue!

We still get ups and downs.. We still get bad days.. But we also get great days as well... Big thing is to keep his self esteem up and keep being posative about it.. He can still do almost everything .. But something we just do in a different way.

TACC - thank you for reading and responding . I posted earlier having come out of the meeting with my head in a whirl - I went in to talk about next year, came out with him being referred to SALT and with the possibility of ASD at the front of my mind. Am now a little calmer and more rational

I think the problem is I spent so long being told he was a normal but lazy little boy by his school (he only started this school at Easter last year, after being at a horrendous (for SEN) school before that), and a normal boy by my mum (who still maintains this, despite all the OT reports to the contrary), that now being told he doesn't only have Dyspraxia (which I quickly came to terms with, as it explained so many of the quirks I was aware of at the time) but may have more as well, it has really thrown me. I have worked with children with much more extreme needs than he has, and know he is capable of so much, but I still want to cry at the fact that he has only been able to achieve 2b in his reading and maths and 1a in his writing when he is at the end of yr 3. I feel like I have let him down badly. And yet, even at Feb his writing was only a 1c, so he has done so well in himself.

His self esteem is a real issue, he refuses to do so much because he cant do it, or because he has a tummy ache or a head ache. I try and help as best I can, and in fact I will start my notes for school after the summer with that exact thing.

Being tested - he has been under the hospital pretty much since birth for one thing or another (8 weeks prem, opthamologist, just signed off from them and back in for his paed appt and on again for his OT) that he just accepts it as one of those things. If he asks, I just let him know that they are looking at the things he finds difficult and finding ways to help him find them less difficult (I know that's an awkward sentence, but is the best I can do).

Oh boy, I've written another essay. I bottle my fears up so much, that when I start, it kinda comes flooding out, I guess.

And my other big fear is I can see so many of his traits and tendancies in myself. And I have felt for a long time that I am not 'normal', but really don't see the point in putting myself forward for any sort of dx, cos I can (mainly) cope with day-to-day life, besides which I am at the drs so often (high blood pressure, vertigo and recurrant ear infections) that I am worried about being labelled a hypochondriac (or similar).

Hi LRB
I also am a serial lurker, but wanted to reply as I feel I am/have been in a similar position to you.
My son is now 9, and was diagnosed with Dyspraxia about 3 years ago. Last year I asked for a referral to investigate whether he also had ASD, as he was suffering so much at school due to his poor social skills and sensory seeking behaviour.
He saw SALT (again) and the Paediatrician. Who acknowledged that his difficulties with language were much more pronounced than we had previously thought. But that he did not have ASD, as he coped well with changes to routine etc (I do still wonder though)
Also, yes, you can get DLA for Dyspraxia, (we do) although have just re-applied and have not heard anything back yet!
Good luck with everything

Hi LRB, I'm a serial lurker too, lol.
My DS is 6 and was diagnosed with Dyspraxia 2 years ago. He has had SALT for 2yrs (was having SALT before his Drspraxia diagnosis) but has now been discharged because he is now within "normal parameters", try telling that to him when people can't understand him!! He was having physio to try and improve his core body strength but was discharged because the physio felt that having it for 12 mths was enough and he was no longer gaining anything from it. He was assessed by OT both at home and at school and they put in place the help that he needs, ie, writing slope, pencil grips, junior caring cutlery etc and then they discharged him with a view to rerefferal if things change for him. We think he may have some autistic tendencies too but we haven't taken him to the Doctor about it yet. Tonight he had a tantrum that lasted 45 minutes because half way through eating his tea he decided he wanted something else and I wouldn't let him. He also hates loud noises and will cover his ears with his hands if he thinks something is too loud. He is obsessed with Super Mario and it is all he will talk about and he doesn't tend to play with toys and finds it hard to play with other children his age because socially and emotionally he is more like a 4yr old.

When he was first diagnosed we claimed DLA for him and he was awarded middle rate care (we then also claimed for Carers Allowance). We have just done the renewal forms because it is due to stop at the end of this month. I have been really worried because he hasn't been seen by OT, SALT or Physio for over 12mths and so I had no reports from them to send to support the claim. We heard this week that he has been awarded middle rate care again but this time for 4 yrs
When you fill in the forms write down everything that you feel is harder for him than other children his age, it can be quite painful because until it's all written down you don't always realise how different he is from other children. Write everything down on a seperate piece of paper before putting it on the forms because the spaces for each question are tiny and you may change your mind a few times about what you want to put. If you go on the Cerebra website they have a fantastic guide to filling in DLA forms, one of the things it suggests is writing down an average daily routine to emphasize how much extra help he needs. Good luck with everything.

trunkybun and metalmummy, thank-you both for delurking, and your replies. And what you both say rings so true with ds. Poor social skills, check, sensory seeking behaviours, check, language issues, check.

Examples, he told me this morning that he had a particular teacher "yesterday this afternoon, this afternoon and Friday afternoon". Yes his phrasing makes me smile, but it shows his difficulty pretty well. He can struggle to find the words he needs. When asked how he bumped his head, he had to talk through the whole scenario, not just "I stepped on my shoelace and bumped my head", but "I was coming in from play and was walking with x, and then......"

His sessions with the OT - he had five 1-1 sessions dealing with his core balance, his co-ordination issues (couldn't reach across his body for eg) and his sensory seeking - spinning, hiding under things, wrapping himself up in a blanket etc.

He can cope well with changes to the day, as long as he knows about them in advance. We turned up for his swimming lesson the other day to find out it was closed and he got really upset. If I had been able to let him know that morning or the night before he would have been fine, even after school (lesson at 5:30) would have been manageable for him.

Metalmummy, what you say about your ds I could copy and paste for mine. Hates loud noises (puts fingers in ears), doesnt tend to play with toys, gets on much better with younger children - he adores his cousin who is 8 months old, and recently spent part of her post christening party crawling around on the floor with a 4 yr old pretending to be a cat. Also tends to role-play things he has seen, rather than play imaginatively, if that makes sense.

Socially, I also noticed a lot of differences on a cub camp I helped at recently. Unstructured time the others would play football or do things in groups, ds would try and catch the butterflies!, or go off and play by himself. He did join in when someone played with him, but wouldnt join in with others, it was a real eye opener.

I have started to make a list of his differences, and am probably going to start another thread, listing the things I can see, but also asking if anyone else with a dyspraxic child can give me ideas of what they put for their child. As I am a single mum, and he is my one and only, I am so used to him that I don't always see his problems, cos to me that is normal, even if it isn't, IYGWIM.