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Please look at this list and tell me what you think

(37 Posts)
Skylar123 Fri 14-Mar-14 11:15:42

This is recent list of ds behavours. Its a bit rough but most of the detail s there. Can you let me know what you think - all pretty normal, cause for concern? have other lists for toddler and baby both of which i did 3/4 years ago. Sorry its a wee bit long!

Thank you in advance.

Fixation on Star Wars

Previously Harry Potter for many years to the extent he actually thought he was HP and insisted we all called him ‘Harry’

Talks non-stop about it all day long

Will ignore question/conversation when spoken to and begin to tell you about it

Wants to play it on the computer/phone all day long – will not break easily including to eat and toilet

Interrupts conversations to change to this topic

Gets frustrated if not heard or responded to.

Very focused when playing this game using computer or phone but does not sit still, will crouch on toes and rock back and forth slightly.
Never gets tired of it
Takes what happens in the game very seriously

Repeats wording from the game off by heart and in length

When not focused in this way he becomes less focused and has daily bouts of being hyper which consists of running around in a manic fashion, climbing dangerously, emptying cupboards to find things, becoming very agitated or edgy

Watches the same episodes of a cartoon over and over including certain scenes

Will rewind and forward as he needs to

Gets very cross if he is interrupted

Frequently wants me to watch the same clip with him and will get extremely frustrated with me if i look away or i am unable to do it, so much so he will rewind it or pause it until i can do it or if look away he starts it again.

Will turn my head in the direction of the screen and hold it there

Asks lots of questions about what things mean ie words or actions

Will pause tv to ask me what face that is ie. confused, angry

Watches with subtitles and audio, audio a more recent thing.

Rarely relaxed, will either watch crouched and slightly rocking or upside down on sofa with head on floor.

When it is time to turn off or move on he has to perform a certain routine with the remote control, turning the tv off/over without doing so results in an explosion.

Very interested in the credits and knowing what characters real names are

Will always sit through credits

Becomes very attached to certain adverts, will run in to watch, learns the words to the advert off by heart and will repeat at random times throughout the day. Really likes ‘Sheila’ from the Halifax advert.

(Timers are used for both computer and tv time to allow DS to see how much time he has left to assist with his difficulties)

Runs water from tap often, puts hands and feet under tap. Floods kitchen and bathroom. Has got up during the night to do this

Makes references to an imaginary friend called ‘Aldo’

Can get very attached to older people and sees them as his friend when in fact we hardly know them or they are friends of his teenage sister.

Has got very attached to one or two girls at school who are much younger than him (reception class) and likes to ‘stroke their hair’. However i think the attraction was rather one sided as he tells me they run away or won’t speak to him.

Talks using a babyish voice often

Sometimes when spoken to he will giggle and pull a bizarre over the top smiley face

Gets very interested in facts that he may have come across and will tell anyone about those facts, shopkeepers, gp, neighbours.

Gives people new names some of which aren’t names but colours or similar

Very literal with language, doesn’t get jokes or sarcasm, words with different meanings than which are obvious.

Very literal when pointing out someone is fat or of a different race, smelly, smoking, spotty.

Has great difficulty expressing how he feels

Finds it easier to express himself to me in a drawing

Advanced vocabulary but lacking with conversational skills

When I am cross with him and on his level telling him off he giggles and covers his face awkwardly

Says that he is rubbish and can’t do the things other children can do ie. handwritng & maths.

Licks objects mainly radiator and banister (used to be windows)

Always puts lego in his mouth and says he is trying really hard not to swallow it

Says he has ‘bad hands’ when he does things like strangling

Has to 2 sides to him

Can have a huge meltdown and then once over he returns to being very sweet

Makes a funny squeeling noise randomly

Nervous twitch in one leg, vibrates

Looses sense of balance when walking and walks on heels, sometimes slightly, other times completely

Asks me question after question and repeats himself

Has one real friend, since year 2 (a friendship that was encouraged with help of class teacher noticing DS needed some social help)

Will only play his game at school.

Plays the same game, this is based on star wars where he copies the game character from the game

Will not join in with someone else’s game

Gets distressed if friend cannot be found or doesn’t want to play his game. Friend is very kind and accommodating towards DS.

Has difficulty asking for help from an adult

I asked DS if he misses seeing his friend when not at school he said ‘no, i can see him in my head anytime’

Has frequent meltdowns at home relating to school

Always comments that he feels ill before school

Low self esteem

Doesn’t like large crowds or sudden loud noises

Will not go to school ‘fun nights’, would just stay with teacher and not join in

Finds it hard to personally approach someone and know how to get their attention

Does not join in at family parties prefers to sit with grown ups, if noisy he will sit alone in a quiet spot

Will not go to the park at home and play with others

Likes to build lego from instructions and gets very cross if anyone touches it, moves it, accidentally breaks it, even the cat

Sometimes he gets off pieces of lego out and lines it all up in a huge line across the floow

Makes lists of now and next

Likes to go through putting things where they should be before bed

Lists facts he wants to remember about star wars and actions to make in the game

When talking he will miss out words (usually the last word), he will replace the word with a clap of his hands, so ‘ can I have an ‘clap,clap’ instead of ‘can I have an orange’?

Will also spell the word out in the air rather than say it

Petrified of the dark and flying insects

Doesnt react when he really hurts himself but gets very obsessed with small cuts and grazes

He is very close to the cat however when we lost her, he was very carefree and told us ‘if she’s gone, she’s gone’. Wasnt the slightiest bit bothered.

Has no concept of time, ie yesterday, tomorrow, next week

No longer sits still and listens to storytime before bedtime. Talks over me, asks questions about what I am reading, fidgets, gets up to run tap, put things in place.

Never ever liked or enjoyed being at school/nursery

Lately he has become so anxious it is extremely difficult to get him in

Panics about having to go to school

Less anxious during holiday time and weekends

School is the first and last thing on his mind each day

Doesn’t like playtime or eating lunch at school, learning is hard

Commented that ‘he thinks it’s just him that doesn’t like school, the other children do’

Lay in bed one night and told me ‘somethings not right about me mum’

Needs reminding and prompting to get washed/dressed/eat dinner/leave house

Stares blankly, expressionless

Will not wipe himself

Doesn’t wake up to use toilet – wets bed

Hates wearing socks - always removing them

Fussy eater

Persistent bowel problems

Does not like change in routine, planner is discussed in advance.

No reaction if someone hurts themself

Cannot ride bicycle despite numerous amounts of trying at home and with school

Poor scooter balance, cannot operate the back foot and glide at same time

thanks

Jacksterbear Fri 14-Mar-14 11:30:51

He sounds quite a lot like my ds. How old is he? Does he have any dx? There seem to be lots of sensory and lots of anxiety - related things in your list.

Did you know his name is in your post, btw?

StarlightMcKingsThree Fri 14-Mar-14 11:42:21

You're gonna drive yourself into an early grave.

But, yes. There is a lot there that merits further investigation. Tbh, it is unusual for parents to be wrong that there is 'something'.

I'm so sorry you're in 'is he? -isn't he?' land. It's a tough place to be. I hope you get some answers soon.

Skylar123 Fri 14-Mar-14 15:15:58

Oh blimey didn't want name in post!
He is 7 private dx hfa
I'm in that grave already star

Ineedmorepatience Fri 14-Mar-14 15:49:40

Skylar why dont you trust your sons private Dx??

PolterGoose Fri 14-Mar-14 16:01:20

Message withdrawn at poster's request.

Borka Fri 14-Mar-14 16:15:57

A lot of that list sounds like my DS, who was diagnosed with ASD a few months ago.

Is the list for the paed? When I did a similar list I found it helped to break it down into sections like social skills, sensory issues, speech & language, school etc. Paed said it was better than the report she'd have written & included it in the diagnosis report!

Skylar123 Fri 14-Mar-14 17:02:57

ineed I do trust the private dx but wanted nhs dx but nhs paed is not sure as Ds is ok at school. They see some things lack of gestures and facial expressions, slow to make friends , literal thinking but has been observed communicating and cooperating. I think paed thinks he should be bouncing off the walls or something. She thinks he is having me over by being late for school not coz of his asd at all. Although she has said she cannot decide dx or not until ADOS through clinic. I really don't think she will dx. She's been hard work from the very start.

Skylar123 Fri 14-Mar-14 17:04:19

polter yes was referred to salt at 2.5 yrs and paed (same one) for gross motor skills at same age. Never saw either again. Until now.

PolterGoose Fri 14-Mar-14 17:08:52

Message withdrawn at poster's request.

Skylar123 Fri 14-Mar-14 17:09:16

Agreed borka need to section it off as all over the place. Thanks. I've done similar lists before I even suspected or knew anything about ASD. Took one to nursery teacher in 2011 she said let's see how it goes. I have also found 4 old nursery observation sheets which say , next steps - Ds needs to be encouraged to interact more - encourage cooperative play on a larger scale and to include positive play - to develop his imaginative play - to extend his circle of friends .

Skylar123 Fri 14-Mar-14 17:10:58

polter how did the paed who dx your Ds take this information from the school, if that's what they fault as our paed is really taking on board what school think.

Ineedmorepatience Fri 14-Mar-14 17:12:18

I agree with borka about taking the list with you to the paed.

My diary also got things moving a bit for us. Dd3 is like your Ds in as much as she masks her issues at school.

Most teachers do not see her Asd until I tell them what to look for.

Skylar123 Fri 14-Mar-14 17:13:21

She likes that school at the assessment appointment to but I have managed to just have them at the beginning when all professionals come together to discuss beforehand. She said that usually she has school there to follow up with feedback after and go through results. I didn't want that. I was told by a reliable source that paed won't like me refusing school there and will think I have an agenda which is why I have agreed to the first half hour which actually is fine anyway. I understand why that might be helpful.

Skylar123 Fri 14-Mar-14 17:14:07

I've told paed all what is on list she doesn't listen!

Skylar123 Fri 14-Mar-14 17:19:01

polter dx was through pyschologist original objective tests meeting with Ds over a few days, observe at school . She stated Ds is suggestive to a social and communication disorder but would need further tests to confirm. Another psychs did home obs and ADOS = dx. A paed I saw recently about another issue said the dx psych was highly regarded and also that he can see by spending 10 mins with Ds he is on spectrum! This paed is also very well regarded.

PolterGoose Fri 14-Mar-14 17:19:44

Message withdrawn at poster's request.

Skylar123 Fri 14-Mar-14 17:20:35

ineedmore does your dd3 talk to class members and listen to teacher and follow instructions most of the time with help?

PolterGoose Fri 14-Mar-14 17:21:51

Message withdrawn at poster's request.

Skylar123 Fri 14-Mar-14 17:23:43

We have OT appointment in April. Even when first pysch said in report that Ds had severe handwriting problems and gross motor skills paed still didn't refer to OT. She only did that 8 mths on when sch suggested Ds had dyspraxia and needed referral, I went to gp and get referred to paed who I mentioned above who said its Comorbid to his autism and by god his autism is not subtle .

Skylar123 Fri 14-Mar-14 17:26:12

Also school have now supplied info on gross motor skills to Paed in relation to OT appointment and they say PE teacher says he has severe delays in pe compared to peers ie catching and running and runs on his heels . First I've heard of it, I've been telling them this stuff for years!

Skylar123 Fri 14-Mar-14 17:29:02

Oh polter I don't know I just want nhs to dx. Incase someone in the future says no nhs dx, hmmmm!
Paed asked me what I wanted to do after dx reports were given and I said I want to go trough with nhs, not because I doubt private dx but because I feel it's important.
I had an appointment with daphne keen but I cancelled as already had a private dx and didn't want profs to think I was a nutcase.
Maybe if Dx doesn't come through I can ask to be referred to GOSH?

Skylar123 Fri 14-Mar-14 17:40:53

Also and sorry to keep posting and going on.
Private dx must have been accepted as paed wrote to county council telling them that Ds was on spectrum and they should contact school which they did and autism advisory came in. I got copies of correspondence . Sch have followed most recommendations on private reports. It's mind boggling, why would autism advisory come in if Ds wasn't on spectrum.

Ineedmorepatience Fri 14-Mar-14 17:46:16

skylar Yes Dd3 does talk to other children, on her terms, if she has something in common with them, eg. They like Harry Potter.
Yes she is able to listen to the teacher, so long as the room is quiet and she knows the teacher is talking to her.

As I have said before, Dd3's Asd is missed all the time at school and this has a massive impact on her anxiety.

It took us 3.5 years to get her dx'ed and we have had to fight all the way.

Sorry if I seem negative sad

Skylar123 Fri 14-Mar-14 17:53:07

ineedmore thanks that is very similar to my Ds .
I was thinking last night, it was only a year ago we first went to see paed so in reality to get dx in a year (ie next appointment in few weeks) would be very lucky going, especially with a paed who clearly doesn't agree with labelling children. I think he will get the dx just not this time.
I was really annoyed that the paed said Ds isn't anxious about sch and that she thinks he really likes school and his teachers when she spoke about his school refusal issues and how he draws me pictures of worries at sch that show him blocking his ears and lots of stickman surrounding him and him all alone at playtime and writing 'why'

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