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Here are some suggested organisations that offer expert advice on special needs.

If your child is on the ASD spectrum

143 replies

crispyporkbelly · 15/04/2014 11:10

When did you suspect it and why?

Thank you

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WhoKnowsWhereTheTimeGoes · 17/04/2014 08:13

Ask for a referral to the developmental paediatrician. When DS was diagnosed 3 years ago these referrals weren't just down to the GP (or school nurse which was the route I took), they had to go before a panel, so it isn't always easy.

DS was diagnosed with Asperger's Syndrome aged 7. The signs were there from before the age of 2, poor eye contact, lack of interactive play, dragging you instead of pointing, obsessions (esp. with things that spin, toy car wheels, washing machines), extreme fussy eating. I didn't actually ask for a referral till he was 6 as he got lots of extra help at nursery, pre-school and school, plus speech therapy and managed fine. Things have got harder as he has progressed through school and the expectations get higher though.

In situations where he is content his traits still appear fairly subtle, many of his friends parents have been really surprised when I tell them about his autism, he talks and plays happily enough with other children, is happy at mainstream school and copes with mainstream activities such as holiday clubs, Cubs etc. However that can make it harder to get help for him.

HoleySocksBatman · 17/04/2014 08:16

This reply has been deleted

Message withdrawn at poster's request.

crispyporkbelly · 17/04/2014 09:36

Ok will do. It's going to be next week now as the clinic is closed due to lots of drs being off on holiday :(

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crispyporkbelly · 19/04/2014 13:53

Feeling rather sad and confused today. One minute I think I'm making something out of nothing the next he will do something and I'll be worries again :(

I was spinning him around with his face above my head and he would just not look at me but was laughing at being spun.

When he eats his dinner he doesn't look at me.

I broke down to my partner last night as we've been discussing it (he's noticed all the things I said too).

Maybe he's just too young to tell but when I see other kids his age I get very worried and can't help but compare as they're so much more social and interactive.

Ds will play on his own for ages and won't involve me. If I try to play with him he's not really bothered tbh.

Just needed to note this down as a sort of diary. Maybe it will help. Next week I'm taking him to the gps and will demand a referral for hearing test and see a specialist,

Then I'm going to go to my local children's centre as they have special speech and language classes running.

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WhoKnowsWhereTheChocolateGoes · 19/04/2014 14:52

I know, I've often felt the same way. It is very hard coming to terms with the fact your child isn't developing the way you had imagined, isn't interested in other children etc. I've worried myself to bits over the years. But getting the diagnosis has really helped me accept who he is and helped me find ways to support him. In some ways he is easier to parent than some neurotypical children (he's very rule-abiding and doesn't get into danger as he is not very adventurous). I find it really hard making the decisions to embark on big things (getting diagnosis, currently applying for statement) but once I do I feel much more in control and as though I am helping him, that's the way to look at it.

Good luck with getting the referral.

crispyporkbelly · 19/04/2014 14:57

Thanks Who, my ds is the opposite and a complete daredevil and fearless! :)

It's weird because in the morning he seems better, gives more eye contact etc but as the day progresses it gets worse with tiredness maybe? Weird.

I've found the paed I want him referred to so will ask my dr (who is usually v good) next week

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mummytime · 19/04/2014 17:58

Do keep a diary - note down the eye contact in the mornings and how it disappears. Try to keep as accurate a diary as you can. For instance I just learnt that meltdowns can occur hours after the trigger event. A diary will help you argue for and get a diagnosis. I will also help you spot triggers.

crispyporkbelly · 19/04/2014 18:15

Thanks MT, good idea I will do that.

He's not babbling at all now, unless prompted or pretending to be on his phone, he makes the same noise over and over - hard to describe but like 'eehhhhhhh' from his throat, he doesn't open his mouth to do it.

He uses this noise when happy or doing something

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crispyporkbelly · 19/04/2014 18:15

Does that noise mean anything to anyone

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stillenacht1 · 19/04/2014 19:28

When my DS was very small he used to do a scream that could shatter glass- not just a normal baby scream for attention or tiredness or hungry. He did this scream/squeal until he was about 4/5. He also did (and still does) a noise that sounds like growling or croaking (making a noise while breathing in if that makes sense). Hope you are ok OP xxxx

crispyporkbelly · 19/04/2014 21:05

Thanks still I'm ok-ish x

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WaveorCheep · 19/04/2014 21:38

Marking my place to come back when I haven't got a poorly 1yo to settle.

saintlyjimjams · 19/04/2014 21:46

Have you seen the video library

(sorry if already mentioned).

www.firstsigns.org/asd_video_glossary/asdvg_about.htm

I first suspected when my son was 17 months because my happy smiley baby wasn't pointing and had started to lose the words he had had, and regressed in other ways (eating). He also began to have bowel problems.

He's a teenager now, very funny, still very happy, has a good life, but is severely autistic.

crispyporkbelly · 20/04/2014 07:20

Hi Saintly, yes I've registered as I want to watch them but can't do it on iPhone or iPad as needs flash so will watch on my partners comps later.

I watched some vids on YouTube of nt children and those with suspected ASD at ds' age and he showed similar traits but it was all very subtle to be honest.

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WanderingTrolley1 · 20/04/2014 07:23

At about 12 months when DS's cousin, the same age, started talking and DS didn't.

youarewinning · 20/04/2014 07:28

Another who always felt something was 'different'. Also sought help when he was 2yo from HV.

It was only when DS was 8yo and I went to GP did we get a Camhs referral and is now awaiting assessment for HFA/AS.

crispyporkbelly · 20/04/2014 07:30

I'm guessing the dcs who are getting diagnosed very late are high functioning and in mainstream schools?

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saintlyjimjams · 20/04/2014 08:39

Crispy - it is very subtle.

I was on red alert with ds2 & ds3 but it was still hard to tell. In ds2's case he started pointing at 12 m

saintlyjimjams · 20/04/2014 08:48

Grrrr
Months so I suspected he was okay. Then at 18 months I took him to meeting about ds1 at nursery. Nursery offered to look after him in with the other kids so I could talk to ds1's professionals without interruption. When I came to collect him he was in circle time with a bunch of kids he'd not met before but was watching them to see how to behave & copying what they did. I knew then he was fine.

Ds3 was harder. He didn't point until about 16/17 months & it wasn't a lot. He has texture issues with food & had never really chewed toys. I took him to a baby gym/dance class & he isolated himself from other kids & was very clingy to me. Speech was developing but very strangely. I had his tribe tested at the autism research unit (some people will be sniffy about this & I don't care). His milk spike was worse than ds1's. I spoke to the guy who runs it & he said sometimes it means nothing. I said I didn't want to put him on soy - he suggested trying goats or milk from guernsey cows (different milk protein). I switched & within days the lights came on & he's 9 now and absolutely fine.

PM me if you want to know more about that. I cba to argue with anyone on here about it but happy to share more information. My view was at 16 months it wasn't a huge issue switching milks & in ds3's case it seemed to help. Gluten free helped ds1 a lot when younger

Incidentally ds1's neurologist & current paediatrician support trailing gluten free/casein free diets. Do PM me if you want more information.

saintlyjimjams · 20/04/2014 08:48

Tribe = urine!

saintlyjimjams · 20/04/2014 09:03

Don't get too hung up on eye contact. DS1's eye contact can be very good indeed - what was noticeable though was he had trouble from a young age following adult directed points or directing his eye gaze in response to a 'look' for example.

This completely outs me (so I might remove this message later) but if you look at the second video down (the 'chatting' one) on this page taken a few years ago it shows how well ds1 can use eye contact. It's still one of his most powerful communication tools tbh alifeunlimited.wordpress.com/lamp/

I would say for ds1 the earliest signs were a difficulty following adult directed points and exclamations, and an inability to imitate (although I didn't recognise that he was unable to imitate until he was about 4). This meant we could never show him anything. We had to teach him everything hand over hand until he was about 8 and learned to imitate. I had no idea it wasn't usual to teach everything hand over hand until I had ds2 and he just did stuff (eg drinking out of a beaker) by copying us.

shushpenfold · 20/04/2014 09:09

Gosh- this thread has brought back a lot of memories. My ds had the full multi-disciplinary work up and it took an inordinately long time to diagnose that he didn't have an autistic spectrum disorder but instead a pretty severe SAL condition. He could not express himself to others with speech and could not understand what others were saying to him.....effectively he was having to be in his own little world, especially with other children who could not make the correct allowances for him. It was heartbreaking to watch him as he took a long, long time to make friends and then only 1 or 2 people, generally the only 3, 4 and 5 year olds who would stay still for long enough to chat to him slowly. We were advised by a very, very good HV at the time that we would know one way or the other by age 7 and she was spot on. I still have video of him at age 4, really really struggling to speak clearly and make sense alongside his very straightforward and sparky younger sister, but when you fast forward to age 7, he'd come on in leaks and bounds, had some friends, could speak far more fluently in more complex sentences (although with some amazingly mixed up sentences at times....really interesting to hear) With the benefit of hindsight, the following things helped;

Having other siblings (if able to) and especially the younger ones as our ds could talk in baby language with them and gain some real confidence from being understood, loved and laughed with.

Tutoring on the basics of maths and english. He was missing much of the meaning of his lessons as by the time he'd worked out what the first sentence meant, he was then missing the second and third ones. He would frequently write out what was on the board as he didn't know what he supposed to be doing. He leapt forward about 2 school years in 6 months, just because somebody sat down with him and explained it through pictures and other SALTechniques.

SALT, although it's purely giving the techniques to the parents to then practice at home...not sure what I had thought it would be any different but there you go!

As little time and other pressure as possible. I had to actively back off from speeding to places and didn't add on the usual group of after school activities etc. We had to give him time and room to process.

My ds is now 13 and still finds english difficult (and embedded maths in english) and the SAL issue has now been narrowed considerably, although will be a lifelong problem. When he was first diagnosed the SALT said that he would grow out of it by early teens.

My last piece of advice would be, listen, take in all the advice but still judge all of it on your own child, who can really surprise you and definitely the experts. They will tend to underestimate what can be done through sheer hard work and determination, especially on the part of the child. My ds works his bits off and it's really starting to pay off now.

shushpenfold · 20/04/2014 09:25

Sorry - didn't answer the question. Investigations at age 3 but knew ds was different from 2 onwards.

whatadrain · 20/04/2014 09:28

I suspected DS1 had something wrong very early on. Even as a new born he never looked at me! He was diagnosed on his third birthday after he 'failed' his two test with the HV. Early diagnosis is key to getting the right school place!

crispyporkbelly · 20/04/2014 09:31

Thanks for the great advice penfold ill take it on board.

Interesting what you say about siblings because we've been wanting to try soon but this has definitely halted things as I started thinking we should really just concentrate on ds at the moment. But then another part of me thinks it will help him to have a sibling.

Saintly I was researching goats milk after I saw you post on it before and it seems to be much much better for children so I think I will try it for a bit and see if it helps.

I've started a diary today and think ill video him in his natural surroundings to show the dr/paed

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