Ds just dx with high functioning autism

[MamaMaiasaura]

What happens now? Pead met us for first time and gave diagnosis then and there which was a bit of a surprise as expecting lots of tests appts before dx. She said it was between aspergers and HFA, but that because of his speech delay HFA, with above average intelligence.

Feel :( and awful for not seeking help sooner as read that under 5 is most important time for intensive help. He is almost 4 1/2.

i have to collect my own u5 from school in a minute, who has recently been dx'd with ASD, but i couldn't read this and run off.

there is are a few of us about who have very recent dx's with DCs about the same age - in some areas they won't even entertain assessment before 6/7 so you've not let him down at all

there's in the pot, on the table and have a {{{hug}}}

you've done well in seeking help - it'll be fine, honest x

Don't feel awful, MamaMaia. Well, actually, you will feel awful, but not about his age. You are doing your best for him, he's still really young and if he's got good intelligence that will only help him. UnChartered will direct you to the support thread, which is really useful. In the meantime, have lots of (((hugs))) and maybe open the a bit early.

Thanks uncharted

have bumped the 'recent dx' thread

gtg

keep posting OP

x

Hi mama, I am sorry that you are going throught this.

I have a daughter with ASD, she is high functioning. She is 9.

She was only Dx'ed last year but in that time has made good progress. She is being supported at school now.

You have definitely not done anything to beat yourself up about.

Be kind to yourself and good luck.

oh, and keep coming on here for great advice and support.

Don't feel bad, sometimes it just takes that long to face the fear.

Just don't really know what happens now. Dr writing letter/report for preschool and infant school. I forgot to tell her about how when we are trying to talk to ds it's like he can't hear and that we have to really help h focus and still doesn't always work. Do I call her or isn't it important. She said something about TEACCH and also multi disciplinary meeting to arrange school entry. Will be main steam school. I didn't ask about time scales either.

Also (this sounds awful) I we apply for dla as haven't really realised how much we adapt and change things to meet his needs. And actually me returning to work was in part delayed as he couldn't cope with childcare and only managed 3 x morning sessions at preschool and even then doesn't always cope with going.

Def apply for DLA, send off copies of all letters and reports with it. Even if he doesn't cost you much more than a 'regular' kid, think of it as payment for the unquantifiable extra work you have done, consciously or unconsciously, getting him to where he is today. The form is very daunting, do ask for help here, but it does make you realise how much more difficult your life is to other parents. Also, if you have other kids their lives are affected too, whether they know it or not, the extra money can be used for general stuff or split it between everyone's child trust funds. He may need to go to university so you could use it save for that. And hobbies for those on the spectrum can be expensive!
Also Child Tax Credit (if you get it) increases with DLA.

Big hugs to you x

Please dont feel awful about not getting help earlier as I expect you may have had some assessments but most proffs do a wait and see approach when they are young as things can alter greatly as they mature x

Be kind to yourself because you have been fired a dx so quick which is excellent in some respects but like a slap in the face without chance to even consider and absorb the possibility yourselves yet.

More choccies and some baileys for your bedtime drinkies :)

I'm still not convinced he has it, and wonder wether he's just very bright. I saw the article about the 3 year old girl who is in Mensa and ds space knowledge is vast, more than most adults, he's also able in other areas. Is he just very smart? I don't know

I told his swimming teacher and he was very surprised and said he doesn't seem autistic at all and just like any other 4 year old, as did my neighbour.

I am confused

DS1 was diagnosed with HFA at the same age, wee bit older.

He is very bright, his IQ tests as part of DX gave him scores in the top 0.2% - at that time he wasn't toilet trained and his speech was more or less unintelligible.

He's nearly 7 now, coping well in MS school without support other than a visual timetable that he manages himself. Same at home, visual time table that he manages (actually, several, he has one for school/ not school, a now/ next one and a schedule for the morning.)

Most people, including his teacher and SENCO, do not accept the DX, we are just getting on with it tbh. I can see he is not like every other little boy - he's not even anything like his two completely NT sibilings!

DS has a very high IQ, excellent memory for detail, can do maths with his eyes shut but cant write.

If you see him out and about no one would have a clue and would class him as an overactive 6 yr old with incredible language skills and knowlege and curiosity about the world.

But put him next to his peers and he stands out like a sore thumb :(

DD has a vocabulary of an 8+yr old (SALT result), can draw and write and has an amazing sense of humour.

she can't play though - she plays by mirroring other children. she mimics what they have done, but after they've 'gone'.

she can dance and sing like a nightingale - but neighs like a horse when excited

she can amuse herself with a ball of string or a string of beads for hours, making patterns on the floor but has never pretended to feed a baby doll.

she can go for hours at home not saying a word, but has to sing herself to sleep.

in fact, i found this on facebook the other day, and posted it to my own timeline...

^The Autism Paradox....... ♥

1. It's easy to recite an entire book but difficult to make up a story

1. It's easy to line up toys but difficult to stay in line

1. It makes perfect sense to climb on the sofa but little sense to sit on it

1. Memorizing the Presidents in order - 10 minutes. Packing a school bag - 10 hours

1. Family pictures on the wall are boring but that speck of dust next to it, now that's fascinating!

1. Talking about weather patterns - piece of cake. Talking about my day... impossible!

1. Ability to focus on spinning objects - timeless, ability to focus on homework - 3 seconds

1. Being called by name, can't hear it. Some owl hooting in the distance - clear as a bell

1. How to operate the remote control - zero instruction. How to button up pants - intensive instruction

10. Navigating social rules - poorly skilled, Navigating from the back seat of the car - highly skilled.^

give yourself time Mama, even a week later after DX i was expecting DDs Psych to tell us he'd got her notes muddled up and was wrong about her

I really, really, love that list

Shall we start a campaign to get it cut and pasted into the new dsm v asd diagnostic criteria ?

Do you have anyone in your family who might be considered eccentric? ASD is usually genetic.

I love the list too We are busy having our usual weekend argument re number 7. "I'm not doing it. I don't care what you want me to do"

Silk My dad and husband have the eccentric bit of ASD. I have the social bit. The kid was destined!

Dh is very intelligent and shit socially. Was loner at school and had a few friends (bit like me except I have a bossy confident exterior I project). They ? Dyslexia at uni but by that point it was irrelevant to me. Had issues thought school with handwriting, speed, behaviour etc often told I was the brightest child in the school blah blah. Paed at ds2 assessment said highly likely dh is HFA. My sister is dyslexic and both her dx have SEN. My eldest ds has issues with handwriting, speed organisation etc (so like me) and ? Dyspraxia. So yes there is family history. It's just as I type this I can hear him
Playing with his brother and he's just so happy

*Both her dc have SEN

That's probably because of the all the hard work you have put in without realising.

Hi there, my almost 6 year old son has just been diagnosed with asd too. His speech has since been found to be above average, just that he often refuses to talk! Had he had the SALT assessment first, he would have probably got an aspergers diagnosis. Not that it matters as the 'aspergers' diagnosis is being phased out

btw Mama at 4 my son didn't seem at all autistic (although with hindsight I can see there were traits.)

Now, he's almost six, it's really obvious

So doesn't get worse with age?

I don't think that DS has got worse with age. It is more that everyone else has developed at NT rates and abilities. THerefore DS at 6 "looks" worse than he was. He isn't. He has always since birth been a "difficult" child, slow to hit milestones etc. Until y1 all of the traits could and were written off as "summer born" "boy" "naughty" "lazy" etc etc.

No but you might notice it more because you're in contact with more children his age and the developmental stuff has ironed out a little among them. Thus, you can see the social issues more.

Hi Mama, sorry to hear of your DS's dx and your shock. I think it can be so confusing because autistic traits can switch from near-invisible to glaringly obvious depending on the surrounding environment. Our DS, 3, was dx last month and we just had him seen by an ABA consultant this week. In our own home he is so hf, talkative and intelligent she could hardly see any traits. At his preschool and even just in the street he is a different child - withdraws into himself and/or distracted by everything around him. I think when you have a very hf child you can easily convince yourself the docs have made a mistake or been to hasty to dx, but I think it's when a child's out of their "comfort zone" (sorry to be all x factor) that asd is more evident and that's what really counts - our kids can't avoid the unpredictable parts of life eg school. Good luck getting whatever support you can and take heart in your DS's strengths. The fact he's developed so many abilities so young proves you have been intervening already, just without realising it.