ASD - what is/was your DC like at 5 years old?

[2006hildy]

Hello all. Our DS YR 1 dxd HF ASD delayed expressive language is in a mainstream school. I'm just looking for others who have been in a similar position to share their experiences. Not statemented yet.

G is a gentle mannered boy. Uses phrases to speak and makes his needs known by guiding your hand. Out of his Triad of impairments his Social skills are the worst at around 18 months old still playing alongside other children. He can do his spellings using the whole word approach. Amazingly he can read out loud. Can Google/You Tube only subjects he is interested in eg, Thomas the Tank Engine. Very fussy with food. Does not like noise often wears ear defenders. He toilet trained himself at 3 but still blocks the toilet with lots of paper and leaves his trousers off. Likes the trampoline. He loves routine and will easily dress himself ready for bedtime before I have thought about it. He is very much in his own world.

What behaviour are they displaying. What can they do/ not do? What is your DC like now? Have things turned out better than you hoped when you first realised things weren't as they should be?

Thanks all.

DD has no dx as yet (am shitting bricks about her Psych appt this week) but is almost 5 yrs

she will talk you into circles about anything and everything and is currently trotting and neighing up and down the living room - she eats the same cereal, has the same juice, the same sandwiches every day, is very reluctant to eat anything food in any other state other than that which it was 1st introduced to her -
ie ham = ham, not with anything else, apple has to be raw (not in pie/cake/biscuit), strawberries are whole fruit, not an ingredient, cheese has to be solid (not melted/spreadable)
she can do buttons, write very well, but won't go up and down stairs by herself.
she has major issues with hot/cold
she spells using phonetics obsessively - and counts obsessively too
she strokes and will sniff people if she gets the chance

the 'i'd love to be in her world' remarks by the playgroup leader when she was 18mths were my 1st 'flare'

and she can sing like an angel

Ds at five didn't speak although he could read out loud and write and spell. His behaviour had to be seen to be believed, he was aggressive, destructive and we spent much of the time in survival mode. He still wore nappies, would smear at every opportunity, had 1 to 1 support for the safety of the other children and himself but still attacked them if they got within throwing distance. He had no sense of danger every window and door was locked, he'd escape if he got the chance, he climbed six foot fences and eight foot walls without a pause, he'd climb door frames and curtains and swing from the top. He slept 10pm til midnight and 4am til 6 am and sometimes he didn't bother. It was probably the hardest time so far tbh.

Now he's 17 and he's lovely, well behaved, quiet and my pride and joy. He can talk but doesn't talk a lot and has selective mutism which means he can't speak at times either. He's never aggressive or destructive and is currently sleeping about six hours a night which is the most he's slept ever. We still have routines because he finds life easier that way.

I think you'll get heaps of different answers as every child is so different. Our daughter is 4.5 now and in mainstream pre-school. She sounds a lot like your son. She is doing some spelling and reading (but more through letter sounds as opposed to whole word). She is speaking now, meaningfully, with very little echolalia (that has changed alone in the last 6 months), not only is interacting with her peers but initiating play with them at pre-school too. At age 3 she wasn't interested at all in her peers. She went from hating dolls at age 2 to having elaborate tea parties with her princess dolls (I was invited to one yesterday afternoon - we had a great time lol!)

Her delays are the same as your son, she has age appropriate receptive language and delayed expressive language. When she talks to her little friends the conversation is usually 20-80% with DD's 20% involving lots of bossiness about how she wants to play LOL. She is also a fussy eater. I have to hide vegetables in meals.

She suffers a lot of anxiety, especially when she can't do something the right way or finds something a struggle. She also needs to have time to herself every day. That was hard for us at first but we realised we like having some 'me' time too and its especially important for her.

DD was definitely at her worst between 18 and 30 months. We NEVER thought she would be where she is now. It was a hard time for us and so very frustrating for our poor DD. The changes in the last 2 years have been almost miraculous and we continue to expect big changes between age 5 and 7. We expect our daughter to be able to do anything she wants to do when she's older, be it university, marriage, anything. Aim super high because in my experience those who are meant to be helping you in the system won't be!

I hope some of that helped. Keep up the hard work and faith, it sounds like your son is doing well and once you get the statement hopefully that will provide a bit more help at school. Our DD has a statement and will have 1:1 support at reception in September. The statement will hopefully get you everything he needs. Good luck! xx

heaps of different answers will be good

My ds is 7 now and has come along way in the last 2 years. He has HF Aspergers.

What he still struggles with:
He has severe sensory processing difficulties, especially touch. He still struggles with hair cuts, hair washing, clothing textures, being touched by others, nail cutting, unexpected tough etc but is also sensory seeking for touch so mouths everything. He has a chew Q which he will use but if something else is at hand then that goes in instead. He talks incessantly but is learning to do silent talking (he can manage 5-6 minutes of silent talking (ie talking in his head) and is about fit to burst when his time is up and he can talk again. At the same time he is very intolerant of others making noise. He can't go near certain shops if they sell spices, soaps, perfumes or nail products and the nail salons in malls here can be a real issue as he can smell them from a long way away and can trigger a major meltdown. He has a very closely guarded personal space yet breaches others personal spaces constantly. He has no concept of playing in the usual sense, no ability to entertain himself, is extremely demanding and downright exhausting. He also cannot yet read and write.

That said he has made some major developments in the last year or so. He has quite suddenly become o.k. with submersing his head in the pool and wants to regularly go underwater in the bath. It defies explanation about what a major feat this is for him (6mths ago a drop of water on his face could result in a reaction that took hours to calm him down from) He also went on the flying fox by himself which took balance, core strength, bravery, co-ordination and determination all of which are skills he struggles with. He has made and maintained friendships with a couple of children at school, he has managed in a classroom setting with only 1 hour a week support. He is lovely and funny and creative and full of weird and wacky ideas that will take him far in life.

DS will be 6 in July. Not officially dx'd as yet
Still mouthing toys, licking things, spinning, repetitively jumping on the sofa and ripping up books
Only just writing his name (3 letters)
Can read a few simple words
Not much speech (unless talking about Moshi Monsters or Dr Who)repeats most things his sister says, counts numbers obsessively.
Can't (won't?) dress himself
Sometimes runs aways in school playgroud (TA has to help chase him)

quite laid back, not aggressive, funny (makes up words), great sense of humour, excellent gross motor skills (can ride bike etc.), toilet trained both day and night.

DD is in special school for SLD/autism.

She has a few words but has severe verbal dyspraxia alongside ASD which was diagnosed as just into severe category.

She has barely any joint attention and likes to sit and look at pens for ages. But she responds to singing well and enjoys cuddles and affection and will say "love oo".

She is like a young toddler in many ways, loves to be chased and tickled and is very demanding of my attention just doesn't know what to do when she has it. She will smear poo and empty drawers and take her clothes off to get my attention.

She cannot play with toys (she chews them) or other children at all, but likes to look at children and giggle.

She is very sensory seeking and chews everything and is always on the move. Her concentration span is basically nil and she will not engage in anything ie a book or TV. She used to draw lots but now prefers to chew the pens.

She eats with her hands and is half toilet trained. She likes to get up and play during the night. She is pretty easy going although she tends to shut down in busy places and is getting more anxious as she gets older.

she also has quite bad low tone and coordination and balance, can only JUST use a spoon and has trouble on stairs, she flops over a lot and puts all her weight on you.

also DD used to know all her letters and numbers and could read some words (at 2) ..we assume she still knows them but she can't say them. Will now follow a few basic instructions

DS still eats with his fingers too.

DS only just dx with AS co morbid traits of adhd, spd, scd, vocal, motor tics he is nearly 7

As a 5 yr old he wouldnt wear clothes and would rip them off even more so when stressed. Agression appeared at that age which wasnt there before due to the demands of school life which was an exteme wake up call. So was the start of disapearing into his imaginary safe world of superheros and re encactments of tv programmes and computer games.

Control stepped in and he would refuse to join in any games we set out to play as a family due to not knowing the outcome or it not being played his way. Playing games to him was a couple hours of setting a game up and then leaving it basically preparing the room ie. shops and dictating the rules of play and that was about it. Still have that issue now and still working on it.

He would talk constantly and still does, he knows no fear at all and would happily stand on upstairs window ledges to look for his sister out playing.

Favourite thing? His dog he loves his companion and has respect and love for all animals. I am glad about this but we had the issue of him barking and growling and acting like a dog and wanting to be one rather than himself. This has stopped now.

Food issues were mild. Good eater but prefers everything whole or at least big chunks. No sauces only tomatoe but god help you if the sauce touches his food unless he has dunked it.

Do they grow out of being noise intolerant? We went bowling on Saturday for G's benefit but he couldn't cope with music and Tv screen making noise, with lots of people around, as our local place has shut down. He just rolls himself into a ball clinging to his ear defenders and hoodie. I usually just leave but hubby already paid and wanted to stay with older son.

is wanting to be a dog common in ASD then?

DD alternates between dogs and horses - she's howling right now, as that's what dogs do at night, apparently

i can only speak from experience, but DDs noise tolerance is very dependent on other influences too

if she's distracted visually then almost any noise can pass her by - if it's sudden and breaks a silence i can physically feel her heart jump!

My DS is now in Y3. Diagnosed with HFA last year. No language delay, very bright, but socially awkward and emotionally immature. He is both hypo and hyper-sensitive to water. He will get terribly upset if it starts to rain when he's out and he hasn't got the right coat on. Especially that soft misty sort of rain. We can just about get him to school on a rainy day if he's got a hood and an umbrella. But he loves to stand under a strong shower or be under the waterfall feature in a swimming pool.

I think the most important thing for me has been that the school has an inclusive, nurturing and generally caring attitude. He's in a huge multi-cultural city school which just seems to have a good atmosphere about it. It's more important than the academic side really, which is far removed from what I thought I would be saying at this juncture!