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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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gamerchick · 16/04/2014 11:37

I asked the family unit why it's taken from 2-7 to get a formal diagnosis and she said they like to wait and see until they're 7 now (as is here) because most kids grow out of whatever traits are presenting as autism by then.

Or something like that.

stillenacht1 · 16/04/2014 11:43

Meryl the leading you to something, as if you are an accessory to your child's needs is v common in ASD as is the no sense of danger. I have a NT 14 year old (DS1)... He was so different from his brother. Never led me to things, with DS2 it would happen all the time, grab my hand and then throw my hand to what he wanted (eg the cupboard where the biscuits are/crisps in particular).

At 10 I still have him on baby reins as his sense of danger is still very very poor.

Good luck everyone- I remember feeling how you all felt. I remember it v well. After 10 years of living with severe autism I can say that I am used to it and my heart doesn't ache anywhere near as much as it used to. I remember spending most of the years between 2-5 in tears just driving around with him and felt v isolated. Ime the National Autistic society were hopeless but if you doget a diagnosis get yourself a referral to the disabled children's team so you can get access to services and respite. Good luck xxxx

crispyporkbelly · 16/04/2014 11:47

Meryl, sorry about your concerns maybe start a new thread as your son is quite a bit older to mine, and might get more answers

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crispyporkbelly · 16/04/2014 11:49

Thanks gamer, I'll definitely ask for a hearing test tomorrow as he never responds to his name or me shouting if he turns the gas on

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trikken · 16/04/2014 11:51

My ds is a few weeks off of being 8 years old, he has just been confirmed as having aspergers/hf autism. It has been a long journey for us. Many of these things ring true, limited eye contact, a need for consistency, won't eat a lot of things due to their texture. Ds is very fussy about what he wears. Likes the same things. Melt downs can be unbelievably massive. Another thing is he wont drop a conversation if something doesn't go his way. He can be extremely repetitive in his behaviour. He is not good in social situations, eg school. Can't make friends etc. Hopefully we will find some classes to go to so we can help ds develop and be able to cope better with these things.

HoleySocksBatman · 16/04/2014 11:58

This reply has been deleted

Message withdrawn at poster's request.

crispyporkbelly · 16/04/2014 12:25

He's had a vision test at 12 months and they said it was
All fine so should I still ask for a hearing test

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HoleySocksBatman · 16/04/2014 12:40

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Hedger · 16/04/2014 13:50

My DS (also 16 months) does not have a diagnosis (we are seeing SALTs and developmental paediatricians and have an appointment with an autism expert, Daphne Keen, in June.

The things that we are concerned about are:

  • not brilliant eye contact;
  • inconsistent responding to his name;
  • doesn't point;
  • no shared interest - e.g. he won't bring us toys to show us or look at us much while we are playing together with toys;
  • no speech (although he babbles a lot);
  • very independent and happy to be on his own; and
  • likes spinning things and open/shutting doors.

It's very hard when you first start to wonder, I know. I would make a list of all your concerns (diaries are a good idea) and see your GP or HV - they should refer you to SALT and a developmental paediatrician. It can take months to actually get an appointment so I would start now - you can always cancel nearer the time if you start to see improvement. Also, in the meantime, perhaps try reading into how you can try to improve engagement with you (e.g. the Hanen books, Greenspan's Floortime, etc.). I must say we have seen a definite improvement since we really started trying to engage with him (he was always so happy playing on his own I must admist we probably didn't do enough of it before!). The absolute key is - if there is a problem, the earlier you can get it diagnosed and start on therapies, the more effective they are likely to be.

I would also say that when I posted something similar a couple of months back a good few people very kindly posted to say their child was exactly the same at that age but it turned out to be nothing at all and they are absolutely fine! So try not to worry too much - it's great that you are so on the ball to be able to spot potential signs but please also be aware that 16 months is very young (MCHAT is designed for babies 18 months plus) and he may just be a little behind.

Good luck and feel free to PM me! I got terribly anxious about it all at the time (am fine now!) and it helps to talk.

Hedger · 16/04/2014 13:56

Ooh, yes, forgot to say - absolutely get a hearing test. Our NHS GP tried to fob us off by dropping something loudly behind our DS and saying "well he turned around - obviously nothing wrong with his hearing". However, having also gone privately, we now know it is not as simple as that and babies may be hearing things but not clearly, or hearing at certain frequencies and not others, etc.

The person we saw privately said that our DS has a lot of wax build-up in both ears and that may mean, even though he is clearly not deaf, that he is hearing things as if he were underwater. Glue ear is also extremely common (especially in babies who have had a lot of colds/ear infections) and can have a similar effect.

The SALT we saw said in the last month said she has had six parents come to her desperately worried about their children having ASD and, having sent them to a hearing expert, five of them turned out to have some kind of hearing problem!

chocgalore · 16/04/2014 14:48

Why it takey so long? Often parents struggle to get the DC referred. HVs and GP often know very little about asd and fob you off with the 'every child is different, he(she) just needs time' platitude.
once you are referred you will sit for ages (months) on a waiting list. Once you are seen, the paed likes to take a wait and see you in 6 months again approach (in the meantime, SALT and OT might see your child to feed back to the paed). If paef has still concerns about autism, you will then be put on another waiting list foe the ADOS (autism assessment). We waited only 4 months but I know parents who waited 1year or longer.
And once you have a dx nothing changes anyways (i.e. no extra support - at least in our case and Dd is severe)

Sorry to be so gloomy. Better get the ball rolling now. If your DS has asd (he might not), then it will be a long and exhausting road.

crispyporkbelly · 16/04/2014 15:55

Thank you Hedger great advice, I guess because I've worked in childcare and with children with ASD (but older and v severe) I'm looking out for things. I will definitely push for a hearing test.

choc thank you, I understand a bit more now because of your post

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crispyporkbelly · 16/04/2014 15:56

Even if it turns out to be nothing, it can't hurt to investigate and seek referrals as they do take so long. And like you said Hedger, you can always cancel them

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mummytime · 16/04/2014 16:21

In the meanwhile I would read up on the subject - maybe via the special needs board here. I don't know of any intervention you could do for ASD (other than drugs) that could do any harm for a NT child.

stillenacht1 · 16/04/2014 17:49

Agree with choc...get ball rolling and pull out if needed Smile

crispyporkbelly · 16/04/2014 17:49

Thanks MT, I've been reading loads since
Starting this thread!

I'm going to take my ds to a sing & sign class during the week as he responds well to music. His attention span is pretty awful though but it can't hurt.

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chocgalore · 16/04/2014 18:12

www.winslowresources.com/hanen-more-than-words.html

More than words" by hanen is a really useful book. Even if your ds does not asd, you will find these techniques really useful.

And pop over to the special needs board. We are a friendly bunch :)

crispyporkbelly · 16/04/2014 21:22

Thanks choc there's so much conflicting info out there it's unbelievable. It will just be easier to speak to someone tomorrow.

Realised he's not 16 months yet, will be on the 25th.

All my friends have been really reassuring and lovely saying he's fine and does respond to things, something just doesn't sit well with me. I'm hoping he will just catch up as he's so active and distracted.

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chocgalore · 16/04/2014 21:26

Just go with your gut. All friends reassured me Dd is fine. After dx quiet a few told me they knew Dd was different but they didn't want to upset me by suggesting
Anything might me wrong.

a mum's instinct is often right. Follow it up.

crispyporkbelly · 16/04/2014 21:33
Thanks
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stillenacht1 · 16/04/2014 22:37

Yup. I remember DFiL telling me there was nothing wrong with him and that I was worrying over nothing...hmmmm...

Good luck to everyone starting or thinking they are starting this journey xxThanks

HoleySocksBatman · 17/04/2014 07:33

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Message withdrawn at poster's request.

crispyporkbelly · 17/04/2014 07:56

Thanks for the heads up.

Should I ask for a referral other than for just hearing today? To see a paed or something? A development expert of some sort

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stillenacht1 · 17/04/2014 08:06

Yes I would... I started seeing paed at 12 months because of epilepsy. Even then it took until 28 months to get official diagnosis..."shall we wait another 6 months to see if things change?" She kept saying...really I knew fully at 14 months but was comforted by paed until at 28 months she said it again and I put my foot down for a diagnosis. The actual diagnosis was fine...of course I had been expecting it for well over a year.

mummytime · 17/04/2014 08:13

I would go in with a list of your concerns. But not be prepared to come out with anything less than a hearing test (a proper one, not at the Doctors surgery). I would make it clear you will be returning if the hearing test is fine because you are still worried. You may be surprised and referred to a paediatrician straight away.
My GPs are very good, and have an underlying philosophy that if parents are worried then it needs to be investigated.