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Should I press for diagnosis?

(25 Posts)
tangerinesarenottheonlyfruit Sat 16-Jan-16 15:52:19

I suspect maybe DS's brain is wired differently. People here have suggested PDA.

I've spoken to the school, and they're not too concerned - he's doing well academically - he's in a small group who get taken out to help extend their reading as they're ahead of the rest of the class, for instance.

When I spoke to his teacher about it, she basically said that yes he may be somewhere on the spectrum, but aren't we all on some spectrum or other, i.e. she recognised the behaviours we were talking about but thought it wasn't a great cause for concern.

I decided to shelve it for a while, DS is about to start junior school next September, and I thought - if it turns out he does have some kind of SN- there was an argument should let the new school get to know him without a label first and then if nothing changes, investigate further next year. (Does that make any kind of sense?)

But - two things. DS is not happy. He has nightmares all the time, he's a glass half empty person, and the other day he said to me "mummy, even when I'm happy I'm sad inside" sad

Also, I have just spent an exhausting hour trying to encourage DS to get dressed to go out, lots of tantrums and refusals. He can't (won't) put on a pair of socks for example. He's 7. It often ends up with me and / or DP shouting at him, which I know is no good. This is making us all unhappy.

Maybe we should try to get a diagnosis? Maybe then we can start understanding him better and not getting into these situations where we end up shouting out of utter frustration? Maybe he'll be happier if he understands himself better? He's a smart child. Or maybe there aren't any SN here and I'm just getting it all wrong with him.

I haven't listed any reasons I suspect ASD / PDA mainly as this post is so long already! There are lots of reasons, it's not just about socks!

If I did try to get a diagnosis, where should I start?

bodenbiscuit Sat 16-Jan-16 16:37:04

I can't stand people who say that everyone is on the spectrum. It's absolute crap and it minimises the problems that people with ASD have to cope with.

The fact is that his mental health is suffering and so I would try to get a diagnosis in your position. I have likely AS. My daughter is severely autistic. Our problems are very different but I've been wrongly diagnosed as bipolar and with borderline personality disorder. Now, it is thought that I had AS all along which is the reason for my mental health issues.

PolterGoose Sat 16-Jan-16 16:44:29

Message withdrawn at poster's request.

tangerinesarenottheonlyfruit Sat 16-Jan-16 18:31:59

How do I start that process? Do I just turn up to the doctors? Can I go on my own to discuss it frankly or do I need to have DS with me?

About 2 months ago, a medical professional who was giving him an ear test asked if he had learning difficulties because of his behaviour there. Would it help if I could get in contact with her maybe, so she could write a note of what she observed that made her think that, maybe?

tangerinesarenottheonlyfruit Sat 16-Jan-16 19:06:43

These are the things I'm concerned about:

- takes forever to do simple tasks, like getting dressed. He fights and argues and creates a huge scene. Every time.

- finds certain kinds of change very unsettling, like when his friend's party theme was different to what he expected (not worse, just different). He got very upset and refused to join in for ages.

- finds it difficult to stay focused or on task. If I send him upstairs to get something from his room it's rare he'll just go and get it. He'll get distracted. Sometimes, he will come back and say "mummy I forgot what I was meant to be doing".

- I used to think he had a wonderful imagination. As he gets older I'm now not so sure if he actually knows what is real and what is fantasy. He makes stuff up and acts as if he completely believes it and gets very upset if you suggest it's not true.

- gets upset and cries, loudly, very easily

- is a glass half empty person and seems sad a lot of the time

- talks over people, interrupts and doesn't get social cues about when it's his turn to speak

- he wets himself pretty much every day, maybe once or twice a day and at night

He's 7, and all of this could just be being a child. But some of these behaviours I would have thought he would be able to dress himself withouth fuss by now.

Either way, he's not happy, and I need to start somewhere ...

tangerinesarenottheonlyfruit Sat 16-Jan-16 19:08:17

Sheesh, that's a very negative list!

He's also smart, and funny, and kind and insightful and a pleasure to be around most of the time.

It's bound to be negative; it's a list of concerns wink

IMO yes you should take steps to get him assessed. It's been said on here many times before but a diagnosis is not a label. It is a starting point in understanding where your child's difficulties lie. And better that than weirdo, naughty, disruptive, rude, etc etc. They are all labels and in my opinion all behaviour (particularly children's) is communicating something. If he's unhappy or struggling there will be a reason.

There can be a long wait for assessment and it can be hard to get taken seriously. Especially if school see no problem - and on that subject I also hate people saying "aren't we all on the spectrum somewhere? No we are not (well I probably am but not everyone is) - it's not a line from a little bit autistic to very autistic; it's an umbrella with many different representations of autism under it, so autistic people are under the autism umbrella all with different or varying traits and difficulties and neurotypical people are not under it at all. Stupid analogy but hopefully makes sense. So yeah it can take a long time to get people to listen to your concerns so my suggestion would be start a diary/notebook of significant events/issues and for your own reference any info/symptom lists online that seem to fit. Make bullet points of your concerns and then go and see your GP. Be prepared for a fight. Hopefully you'll be taken seriously and referred.

In the meantime it might be helpful to think of all difficult behaviour as a clue that your DS is finding things hard. So instead of shouting (and trust me I know how hard it is to stay patient and I don't always manage it) tell yourself he's anxious and needs your support.

I will also recommend you either read The Explosive Child by Ross Greene (sits unread on my shelf currently!) or check out the Lives in The Balance website. Particularly the 'walking tour for parents' - this guy works with children such as yours (ours) and his motto if you like is "kids do well if they can" - so if they are misbehaving it's because they are having difficulties rather than being difficult on purpose. He suggests you try and identify their lagging skills and unsolved problems to try and find out what's up with them. It's quite complex but I'm already feeling more positive about parenting my older two (ASD and probable PDA) now that I'm discovering what's tough for them rather than feeling like they're exploding over everything. He suggests you let some little things go while you're figuring out the big stuff so if your DS can't (won't) put his socks on that day and wants/needs your help you help him because it's not worth adding to his problems over socks. I hope I'm making sense, I'm tired. Basically yes if you have concerns get them checked out because parents are very often right about these things and you owe it to your DS to try and figure out why he's so unhappy. Best of luck smile

PolterGoose Sat 16-Jan-16 20:08:45

Message withdrawn at poster's request.

tangerinesarenottheonlyfruit Sat 16-Jan-16 20:31:40

Thanks for the replies smile

I do have the explosive child already. Also unread blush

I got it a while back, after it was recommended here, but when I got it home I had a look at it and it seemed to be for children with more severe issues than DS and I had a crisis of confidence and thought maybe I was making a fuss about nothing.

That was a while back though. I feel more certain I need to do something now.

I'll see if I can find it and have a look, thanks for the recommendation.

I usually do just get him dressed in the mornings. I spent a long time trying to help him get himself dressed without a massive fuss and it was working. He's not sleeping well at the moment though, and neither am I, so we're often late for school. So I just help him get dressed, it get us out the door.

But today, I thought it's the weekend, we're not in a great hurry, I should be helping by guiding not doing. But putting his clothes on ended up a terrible fuss with crying and stropping and refusing to put anything on. The socks were the last straw, he kept putting them on a few inches, then giving up and throwing his hands in the air and taking them off. It was so frustrating and I lost my temper, I shouldn't have done. He told me he wished he hadn't been born sad

We both apologised after and I asked him why it was just a big deal. He said that it was because he didn't know he was going to the park, that I should have told him yesterday. But I don't know how true that is because he makes stuff up, and he makes a fuss even if he's known about something for ages. I notice it's worse when he's tired, and he was shattered today.

"you owe it to your DS to try and figure out why he's so unhappy."

Yes, I do, poor thing. I dread the teenage years if we don't some handle on this before then, how will he cope with being sad together with raging hormones and teen angst?

zzzzz Sat 16-Jan-16 21:07:41

Dressing can be really difficult. No idea if this would work for others but I bought expedit 4x4 unit from ikea and stuck drawers in the sections. One drawer sock and pants, next drawer down school shirts and trousers, elbow that home shirts and then home trousers. You start at the top and work downwards and then you are dressed grin

PolterGoose Sat 16-Jan-16 21:26:42

Message withdrawn at poster's request.

tangerinesarenottheonlyfruit Sat 16-Jan-16 21:43:55

He is funny about most socks. He says they're uncomfortable.

I don't really understand about sensory issues, what does it mean?

tangerinesarenottheonlyfruit Sat 16-Jan-16 21:44:31

I mean I get it's to do with senses but I have no idea what it means in practical terms.

tangerinesarenottheonlyfruit Sat 16-Jan-16 21:46:40

Is there a kind of socks that are comfortable for someone with sensory issues?

DS does like brand new socks, but not after they've been washed a few times.

PolterGoose Sat 16-Jan-16 21:58:16

Message withdrawn at poster's request.

PolterGoose Sat 16-Jan-16 22:00:10

Message withdrawn at poster's request.

zzzzz Sat 16-Jan-16 23:41:22

If he likes them new the issue may be bobblyness/roughness or that they get tighter. You could try a "sock liner" (aka a pop sock) under his socks, or just buy cheep and replace regularly quashes eco conscience for the cause.

I still help my boy change most days. He finds it hard and sometimes we need our energy for other challenges. For me once I know he can do a skill I am much less worried about doing it for him (which I know should annoy me but doesn't well not often )

The biggest challenge is always to tell him to DO something rather than NOT to do something and if possible give choices of two things I want him to do (eg do you want to clean your teeth first or get dressed --like I care!--)

Darkchocolatebuttons Sun 17-Jan-16 08:30:34

As usual, the advice of everyone else is spot on. I have two more recommendations: Starving the Anxiety Gremlin. I have had it for ages but finally, we are now doing a chapter a night. As the parent, it is very hard to hear that my DS feels all these very negative, very difficult emotions. Yet, I think it is helping me to know exactly why he finds life so hard and him to air how he feels and to be listened to. There is a younger version 5-9, and it has a look inside tab on Amazon.

The other is that the distraction could be poor short term memory. One strategy round it is visualisation, so you say to DS - picture yourself doing this: "go up stairs, [pause after each instruction so he can see himself doing it] go into your room, take off your pyjamas, open your drawer, put on underpants, open other drawer, put on socks," (already there are seven instructions - so, that explains the getting lost/distracted) but when we visualise it, we can remember more. Before he goes, you ask him to repeat the list back at you - verbalisation/practice which reinforces the short term memory

HTH.

tangerinesarenottheonlyfruit Sun 17-Jan-16 12:49:56

Thanks PolterGoose. I'll order a pair of those socks and see they make a difference. Will have to watch them like a hawk through the washing process - we're a house full of odd socks!

zzzzz we clashed again about getting dressed this morning. I helped him find all his clothes, he argued about them but we managed to get a set he'd wear (I do the choices thing). And he managed to get his socks on without too much fuss which is a nice change (welly socks for going out in the snow, so maybe easier, but then complained of lumps). But then lost it on his trousers. I should have stayed calm but he was really rude to me.

I don't know what else to do. If I don't stand over him repeating "Put. Your. Trousers. On." every time he gets distracted he simply doesn't do it. He hates me repeating instructions to him (don't blame him!) but it's the only thing that actually seems to work apart from dressing him myself. But sometimes he gets really angry with me for going on at him, like today. (This is something I've only started doing in the last few months, it's not the reason he doesn't like getting dressed in the first place).

Should I really be dressing him at 7? I do help him on school days else we'd never get out the door, but I worry I'm de-skilling him if I do it for him all the time. He can do it physically, has been able to for ages. It's just it turns into such a palaver. If I don't stand over him he doesn't do it, and if I do stand over him he gives up and wants me to do it or creates a big fuss about how he can't. He'll sometimes do it if I turn it into a game but not always.

Darkchocolatebuttons cunning idea. I think maybe I'll swap my chest of drawers with DS's as it has more drawers, and I think that might help. We'll try to start again. When we're not clashing, DS is clever and insightful and we can talk openly about what happens. I can say to him it's to help him get dressed and maybe he'll go for it. He responds well to rewards so I'll think of an incentive to add to the process.

I understand about breaking it down, but I suspect he'd resist that more as it seems like more demands IYSWIM, but can't hurt to give it a go!

Also, I know I can't follow long lists of instructions like other people can. If someone gives me directions like "take the first left, then left again, then second right, then ..." I'm lost already, I can't retain it. No idea if that's relevant to DS though!

tangerinesarenottheonlyfruit Sun 17-Jan-16 12:54:39

How do I start the process for diagnosis? Do I go to the doctor?

Can I go without DS the first time so I can talk frankly?
What should I be asking for? A referral to somewhere?

Thanks for all your help and advice, I appreciate it.

PolterGoose Sun 17-Jan-16 12:56:06

Message withdrawn at poster's request.

PolterGoose Sun 17-Jan-16 12:59:25

Message withdrawn at poster's request.

tangerinesarenottheonlyfruit Sun 17-Jan-16 17:00:08

Thanks smile

Do you think it's worth going back to the medical professional at the hospital who said DS's behaviour was typical of certain learning difficulties (while deliberately failing an ear test) and asking her to share her observations?

PolterGoose Sun 17-Jan-16 17:14:31

Message withdrawn at poster's request.

Darkchocolatebuttons Sun 17-Jan-16 17:32:22

How about visuals to back up memory - so, a list on the back of his door, or on the drawers with instructions/pictures/photos of your DS at each stage as prompts? DS2 avoids all tasks when he fears he will fail. I really don't know if poor short term memory or poor working memory have a genetic link - I am now going to wander off and have a poke around.

Another port of call could be your local NAS - mine know what is happening in our region, so can advise where you should be asking for a referral to.

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