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Original poster

Autism - any input appreciated

58 replies

HappyMumof2 · 20/06/2005 13:23

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Original poster
HappyMumof2 · 20/06/2005 16:13

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Jayzmummy · 20/06/2005 16:19

link{http://www.autism-biomed.org/chat.htm\try this}

Some of the parents in special needs are putting together some info for questions like this.

You can get lots of info from the The National Autistic Society.

If you search the archives here you will find lots of info also.

Jayzmummy · 20/06/2005 16:20

I will learn to do links properly one day!

coppertop · 20/06/2005 16:22

Autism can appear in different ways in different children. My 2 boys are both on the spectrum but in some ways they are the exact opposite of each other.

IME behaviour can vary according to the place/situation. Ds1, for example, really liked his portage worker who came regularly to the house to do home visits. When he saw her one day at pre-school he barely acknowledged her presence. Ih his eyes she only existed while in his house, IYSWIM.

Ds1 used to be oblivious to me arriving to collect him from pre-school sometimes. It was hard to get his attention. At other times he would cry because he didn't want to leave. Ds2 has problems with transition and so gets upset when it's time to leave.

Sometimes my 2 boys can seem exactly the same as any other child. At other times it is obvious that they are somehow different.

Are you able to give a very general description of what concerns you?

Original poster
HappyMumof2 · 20/06/2005 16:23

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HappyMumof2 · 20/06/2005 16:24

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Jayzmummy · 20/06/2005 16:26

Autism covers a very wide spectrum and is a name used to umberrella very many different behavioural patterns.

Original poster
HappyMumof2 · 20/06/2005 16:32

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coppertop · 20/06/2005 18:40

It's hard to tell from reading a post but I think that I too would have some concerns tbh. The lack of speech itself isn't a big deal at this age but it sounds as though she is also having trouble with comprehension. By that age a child is generally able to follow a simple instruction in ordinary language. With ds2 (2.4yrs) I would have to shorten the instruction into very simple terms, eg "Find shoes" or (more recently) "Shoes then home".

The lack of interest in toys is also a valid concern. A simple language delay wouldn't usually affect a child's ability to play IMHO.

How does she let you know if she wants something? Does she point at what she wants?

I know it will be a difficult thing to bring up but I think you may need to speak to the parents. I wouldn't mention autism yet but I think you have to somehow let them know that their little girl is finding things difficult. It's possible that they may already suspect something but don't want to talk about it. I know that when I was worrying about ds1 I didn't dare to talk it through with the pre-school staff in case they thought I was being silly or over-anxious. Instead I used to just say things like "He doesn't really talk". I would have been so relieved if someone had told me that they suspected there was a problem but obviously everyone is different.

Do they still do 2yr development checks in your area? Is there any way you could bring those up in the conversation?

Jimjams · 20/06/2005 20:40

does she point? especially to things of interest. (or does she use your hand)

Socci · 20/06/2005 21:08

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HappyMumof2 · 20/06/2005 21:18

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coppertop · 20/06/2005 21:28

Ds1 and ds2 are always really happy to see each other. When ds1 comes out of school they often hug each other. Every child seems to be different.

Ds1 was quite happy to stay in his buggy when we were out. It was probably more difficult to get him to walk. Ds2 will stage a breakout at every available opportunity and run for the hills. He figured out how to escape from the buggy harness a long time ago so needs extra supervision when we're out.

I can't help wondering if the dad really did forget. It just reminded me a bit of dh when I was concerned about ds1. I remember being seriously p*ssed off when he told the HV that he thought ds1 was fine. I think he was in denial tbh (dh).

Original poster
HappyMumof2 · 20/06/2005 21:40

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coppertop · 20/06/2005 21:48

Ds1 was officially diagnosed at just over 3.5yrs but it was suspected long before then. Ds2 was much younger as we knew what to look out for. He was given a provisional diagnosis a couple of months before his 2nd birthday. His full assessment was just after his 2nd birthday. We're hoping to get the written diagnosis next year but everyone working with ds2 is surprised that the Paed hasn't already done this.

I think 12 months or so is roughly when things start to show up a little more. The alarm bells were really starting to ring when ds2 got to about 11mths old. At 14mths I asked for a referral to the Paed because I could see the traits becoming more obvious.

zebraZ · 20/06/2005 21:49

12-18 months is the most common age for autism to manifest itself, I'm pretty sure that's the usual saying.

Can the experts say... what would happen if this child's autism (presuming it is autism) wasn't properly identified as such at this age... does it matter? Would it be better to let things keep bumbling along for a reasonable period (say, 1 year) until it becomes much clearer that this little girl is "odd"? What would be the benefits of early identification of her problem (presuming there is one)?

Socci · 20/06/2005 22:49

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coppertop · 20/06/2005 22:49

A big advantage of recognising there is a problem early on is that you can get the child's name on the waiting list for assessment far sooner. It can take a year to reach the stage of getting a full assessment.

An early diagnosis can have a lot of advantages IME. Ds1 was dx'ed at 3.5yrs. By that time it was too late to really set up any 1:1 help at pre-school. His 1:1 only started when he went to school. He only got OT at school age too. He reached the top of the waiting list for SALT at 3yrs old.

Compare that to ds2. We suspected a problem when he was a young toddler. I started to teach him how to point at about 16 months old. He started to get the hang of this about 6 months later and his speech then started soon after. He has been getting SALT since the age of 2yrs. He has weekly sessions in a sensory room and full input from OT. My one big regret is that we didn't know about the importance of pointing etc when ds1 was this age.

Jimjams · 20/06/2005 22:57

hmm doesn't sound good to me. However the chances of getting anyone to take it seriously now (20 months?) are pretty remote. DS1 who I reckon a trained monkey should have been able to diagnose saw a specialist at 2 years and 2 months- I told her there was no pointing, looked at things from funny angles blah blah and I was told he "definitely wasn;t autistic" as he was too affectionate and his eye contact was too good. I suspected autism from 17 months (because of the lack of pointing) and he wasn't dxed until over 3. That year between 2 and 3 was wasted.

However, if the parents have no idea then if you raise it now you'll probably be shot as the messenger, and I think it unlikely that you'll be backed up by the medical profession yet- they just can;t notice autism at this stage (god knows why I can tell you now that ds3- 5 months is not autistic). You could raise "concerns" but don't compare to your dd- they won't want to hear it- perhaps say something along the lines of you've been on a course and lack of pointing often means there is language delay and how would they feel about referring to SALT (you can often self -refer) as there are such long waiting lists.

Jimjams · 20/06/2005 22:59

CT- I know a friiend of mine got her ds3 onto the salt waiting list at 8 months as she said she knew he was autistic (2 brothers one NT, one ASD) and the SALTS were sceptical but did take him on. At 3 he was dxed with semantic pragmatic disorder! But she had to really push and I think if the parents aren't poushing for referral at 20 months they'll be told to wait and see - and not qworry until they're 3 (FFS!)

Guess who wants to do a dissertation on early signs on autism in infancy next year!

Socci · 20/06/2005 23:08

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Jimjams · 21/06/2005 08:59

agree- socci- but because the local authorities aren't interested this young (bloody criminal when there's the CHAT test available) the parents have to be switched on and happpy to go and foind the people who can help. If they're not ready, and they get told that so and so has concerns they will easily be able to bury their heads in the sand if they ask the HV etc.

Perhaps a general developmental review and a "do you have any concerns?" type question to see where they're at.

coppertop · 21/06/2005 09:23

Ds2 recently had an IDP meeting where the multi-disciplinary team (minus the Paed) were discussing ds2's next targets. They were sure that ds2 had been given an official dx because the Paed had talked so much about all his AS/ASD traits during the case conference. They were so convinced that they actually went back to the main office to dig out the full assessment report - and were amazed that there was no written dx. Ds2's Paed (different one to ds1) wants to wait until ds2 is 3. The only reason I'm happy to go along with this is because in the meantime he is being treated as though he has got a dx and so isn't missing out on early intervention etc. It would've made claiming DLA a lot bl**dy easier though.

Jimjams · 21/06/2005 10:15

sounds a sensible approach coppertop. But if you hadn;t been switched on then he wouldn't be getting anything.

I wish that they would start to CHAT screen and flag up children who are "at risk" and introduce early intervention then- even if they didn;t dx until later.

coppertop · 21/06/2005 10:23

I agree. Ds1's ASD would have been flagged a lot sooner if the CHAT test had been used. I had no idea about pointing, imaginative play etc so didn't know that I should be concerned.