To ask for advice from parents with children with autism?

(23 Posts)
CremeEggsandMouldyHam Sun 13-Nov-16 17:18:41

Posting here for traffic as I'm planning to go see DS GP tomorrow .

Sorry this is long but I'm trying to give examples.

We was fobbed off by last dr saying all normal behaviour but I'm concerned .

DT2 is 6. My instincts tell me there is something not "right" with him , but I don't know what .

Please can anyone offer any advice on my list - does it sound normal ?

DT2 is very highly strung. If the baby dribbles accidentally on something of his, he cries and cries or gets angry . He can't be reassured that it will dry for example .

If DT1 annoys him , DT2 immediately lashes out in anger . He knows it's wrong and when told off he cries and says he can't help it - he just feels angry .

In comparison, his twin gets annoyed but doesn't lash out .

He chews his fingers (and nails) until they bleed . I've tried everything but nothing stops it - he doesn't seem aware he's doing it .

He's an anxious child - he takes everything literally . A class mate of his told him foxes are vicious and now he worries he will be eaten by a fox when we are out and about . He worries about things I wouldn't expect him to be worrying about .

Whenever he is angry or stressed, he asks to go home . He says he feels safe at home so I think this is him feeling "unsafe" with his emotions. This can be something as simple as hair brushing (although nobody likes brushing through tangles) , or getting in trouble for bad behaviour etc .

He says he doesn't like being away from me especially when things are "different" - for example , he loves going to play at his friends houses but he doesn't like how the walls and floors and furniture are different . He can cope but likes to be at home .

He is reluctant to use public toilets - he fears she may fall in , but also the noise of the hand dryers "hurts" his ears.

He has explosive tantrums - he gets himself in to a state where talking to him doesn't console him.

Clothes are a constant battle - if they don't sit right or feel right he screams , cries etc and it goes on forever! One pair of shoes may be ok one day but a major problem a week later .

Teeth brushing is ok but frustrating as he is desperate to get the toothpaste out his mouth .

He will gag on certain foods or avoid them all together - for example - scrambled egg is too mushy .

There's many more subtle things but that's all I can think of right now .

On the whole , he is thriving at school , he has lots of friends , is well behaved and confident .

These little "quirks" at home though are very stressful as a family and I have broken down in tears after the huge tantrum he has just had because he couldn't line his socks up right .

I feel awful that he's seen me upset but I've explained it is frustration at not being able to help him.

Does this sound like some form of autism / aspergers or anxiety or something else?

I am desperate to help him - help! flowers

BusStopBetty Sun 13-Nov-16 17:30:25

Could be lots of things, but does sound like anxiety and sensory processing disorder.

BusStopBetty Sun 13-Nov-16 17:33:14

The toothpaste thing, does he say it's too strong/spicy? Or is it the texture? If it's the taste you can get unflavoured toothpaste.

BusStopBetty Sun 13-Nov-16 17:36:17

With socks, it can help to wear them inside out so the seam isn't irritating.

differentnameforthis Sun 13-Nov-16 17:38:13

Sounds like my daughter who has sensory processing disorder. This can be in conjunction with ASD, but can present as stand alone, though this is rarer.

With his tantrums, think of them in terms of being meltdowns, or a crisis he is experiencing. All I can do with dd in these situations is to stay with her and reasure that she is safe. She does eventully calm, but it is hard work. How is his sleep?

differentnameforthis Sun 13-Nov-16 17:41:30

DD is on meatonin for sleep, she has "significant sensory issues" (according to paed) and is awating assessment for autism.

Seamless socks are your friend.

It's 4am here (am restless and on phone) but will try to write more tomorrow.

differentnameforthis Sun 13-Nov-16 17:41:59

*melatonin

Mouthofmisery Sun 13-Nov-16 17:42:26

Write a list of all the examples you can think of ready for the Dr. Frequency etc. In some ways it's good to have a twin to compare with. State how long you have felt he was different and has it increased with time etc. Did he struggle to breast feed or didn't settle well etc.

BlackeyedSusan Sun 13-Nov-16 17:52:09

group them into sensory issues. (noise feel etc.)
tooth paste, clothes, handryers food

behaviour:
anxiety (exampeles)
literal
explosive temper
lining up socks.

eyecontact?
does he have any repetitve behaviour?

emphasise that he is different from his twin, that you are having to use different strategies to his twin.

(be bloody grateful you have another one as they will likely blame you)

CremeEggsandMouldyHam Sun 13-Nov-16 18:00:37

flowers for all the responses .

His sleep is fine . He doesn't have repetitive behaviours . His eye contact is fine .

On the outside he doesn't look or act any different to his twin.

The toothpaste is the sensation - it's children's toothpaste with a hint of mild mint.

His twin doesn't bat an eyelid but DT2 starts flapping about after seconds desperate to spit it out . He will tolerate it but that first few seconds he hates . He's the same with all toothpastes.

As a baby he was always moving - legs flapping about , hands and fists clenched and flapping - it was often commented on . He wasn't happy to be left to relax - he wanted constant attention .

Velvetdarkness Sun 13-Nov-16 18:00:51

Those are massive sensory issues and very consistent with asd. Push for a referral. If you have a younger child your HV might refer you as they cover the whole family.

CremeEggsandMouldyHam Sun 13-Nov-16 18:03:42

These things have only become apparent since around age 5.

Is this typical of sensory processing or would they have always been there?

zen1 Sun 13-Nov-16 18:05:43

As others have said, it definitely sounds like he has sensory issues, which can go hand in hand with asd, or occur as a separate condition or as part of another condition eg dyspraxia. In my experience, GPs aren't particularly familiar with all the facets of asd / spd so I would ask to be referred to a community paediatrician. I have one DC diagnosed, one undergoing diagnosis and one who has been through the process who it was decided has lots of traits but is not on the spectrum (didn't agree with this, but still...). Only one went through GP referral, and that GP admitted he didn't know much about how it presents in older children, but asked me to write a letter to him (GP) describing in detail all DS's quirks and referred him on the basis of that. At any rate, it was useful to write it all down so I had something to show the GP (and yes, make comparisons with your other child).

zen1 Sun 13-Nov-16 18:07:58

With my DC, the sensory stuff has always been there, but that's not to say that your DT doesn't have it. Sometimes, these things only become apparent as a child gets older.

w4nnabesahm Sun 13-Nov-16 18:11:53

who fobbed you off? GP or CAMHS?

in either case I would go back and demand a re-referral.

You have to be a persistent pain with these things to get anywhere.

biscuitbadger Sun 13-Nov-16 18:13:17

Interested to see what others think OP. My 5 year old has some very similar behaviours, I've felt for a while he may be (at the high functioning end) of the spectrum. Though he does well at school and seems to have friends, good eye contact etc. he is incredibly literal and pedantic, talks very loud, goes on and on about a topic, doesn't often get when we're joking, very sensitive to loud noises and gets overwhelmed. Things like that. Screams and can't calm down. Doesn't like change. I love him and I also find him hard work.

I decided not to do anything at the moment as our older child had a lot of the same traits and mostly grew out of them by age 8. But if the teacher ever brought it up I wouldn't be surprised.

My family is full of quirky and/or anxious people... none with any diagnosis but I expect if we went to see professionals we'd most of us come out with something! My boy is very much like his father...

Wildberryprincess Sun 13-Nov-16 18:13:29

Generally things are there from the beginning, and from what you mention about flapping etc. this is the case here too. Often things become more obvious as the years progress. I can imagine with twins you had your hands full and simply just tried to get on with things. Eye contact is not the be all and end all for autism. Some children with autism find almost any eye contact difficult, others like mine, usually make good eye contact though sometimes probably more 'intense' than is required for the situation. Mine also don't have repetitive behaviours, though they do like to do certain things always in the same way (otherwise it is 'wrong'). Flapping like you describe would be pretty typical for children on the spectrum, it can happen when happy, excited or distressed.
Don't be fobbed off, I would push for a referral.

FoggyMorn Sun 13-Nov-16 18:16:20

I have 2 DC diagnosed with Aspergers (the older one), and ASD. Both DC are the same but the label has changed.

I recognise a lot of the sensory things you are describing. Toothpaste seems to be a really common one. It's interesting that you say he "flaps about", as unusual hand and body movements are a bit of a flag. Both mine were diagnosed at age 4/5 but the diagnostic process is much longer now than it was a few years ago.
Both my DC are what you might call high functioning and actually have good eye contact unless they are very stressed,
It's true that MANY asd behaviours are also "normal" behaviours, it's more about the frequency and context sometimes, rather than the behaviour it's self, and a lot of "flags" are dismissed and typical behaviour in very young kids but then they reach 4 or 5 and suddenly it's less typical.
IMO, listen to your gut!

Dawndonnaagain Sun 13-Nov-16 18:17:15

Your GP is being a lazy arse. These are not normal behaviours. You need a referral to an ASC clinic.
May I also suggest you start reading around so that you can put in some coping strategies for your ds.
Be strong, tell the doctor you've done some research, you know they're not the usual behaviours for a child that age and added together they make a picture of a Spectrum Condition. If the GP starts coming out with bullshit about eye contact, just point out that most people with an ASC are only expected to have a few things on the list, and not all have trouble with eye contact.

gingerh4ir Sun 13-Nov-16 18:22:09

eye contact isn't a diagnostic criterium in any case. My DC with severe low functioning ASD has actual pretty good eye contact.

BlackeyedSusan Sun 13-Nov-16 18:39:01

you can get non flavoured toothe paste.

ChangingNamesAgain Sun 13-Nov-16 18:58:55

My kids both have asd & a number of other related conditions

Both have normal but shy eye contact, no repetitive behaviours/stimming/echolia/and are sociable and popular so don't write off asd or let gp write it off because of this. It's a spectrum and many kids present atypical (especially if they also have pda like mine).

Twins here as well, & I find it's almost harder to spot because of that because their ability to compensate or mask it seems higher as they have each other to interact with. I haven't found I have been blamed for the most part, other than one ignorant teacher. So don't let that put you off. I'd ask which gp has experience of kids with asd & switch to them for help. Good luck.

differentnameforthis Mon 14-Nov-16 09:00:55

(be bloody grateful you have another one as they will likely blame you)

Yes...very much this!!

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now