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Everyone thinks 3 yo has ‘autistic traits’ 12 month wait to see specialist

25 replies

Dani2891 · 26/02/2018 12:45

Hi everyone -

I have a son who turned 3 a couple of weeks ago. We were referred for speech and language January 2017 and didn’t see anyone until the October. He says lots of words but no conversation, there are issues with his overall level of communication. The speech therapist observed a few ‘red flags’ so made a referral to the child development team. Their waiting list is 12 months !
He doesn’t exhibit any major behavioural issues , doesn’t have to have things ‘as so’ ,doesn’t have any sensory issues, is very adaptable to change. He’s happy and healthy-fun and easy going - he attends nursery 2 days a week and they always tell me he’s had a great day. It’s really just the lack of communication and language causing concern with some lack of eye contact ( more so with strangers) .
With there being such a long wait to see anyone I’m looking at other options. I’m anxious to give him the right support he needs, the speech and language people have told me to keep doing what I’m doing but I feel this isn’t enough and waiting a year to see a specialist is wasted and lost time. The health visitors / doctors / speech therapist have all danced around what may or may not be wrong and suggested lots of different possible labels, which is no help to me or him really. It could be nothing , he could just be very behind - or it could be something on the spectrum, autism, global delay or any number of other things.
He’s becoming quite frustrated at times which is upsetting for him and all of us. I have a 4 yo who is so desperate for him to talk too so they can play proper games together. When I picked him up today from nursery I had a chat with his key worker about a woman I’ve found that is £70 an hour , I was going to have her observe him and give me feedback. I said to key worker that I just want someone to tell me what’s wrong and she said that in their experience as practitioners with children they are seeing autist traits they’ve seen before in children that have gone on to be formally diagnosed, so I almost feel she was sort of saying don’t waste your money -we think it’s autism.
I just don’t know what to do, I’m in tears daily so worried about him and the thought of things always being hard like this. I know it might sound silly but I can’t watch he undateables anymore it just has me in floods of tears- I find it absolutely heartbreaking the thought he may not lead a ‘normal’ life. We are waiting for a call to go to a drop in at the child development centre -he’s not due to be seen there until October for an assessment tho, I am on the list for portage to give us a call. Services as obviously so stretched down here ! And so many children are being reffered to warrant such long waiting lists!
Does anyone have any ideas they can share or similar experiences ?
Thanks in advance xxx

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Teabag2 · 26/02/2018 14:54

Hi Dani,

I could have written this myself! Where are you based? We are in Scotland so not sure all the services would be the same. x

Dani2891 · 26/02/2018 16:14

I’m literally the other end of the country in torbay !
I have good and bad days where I’ll either be totally freaking out sick with worry or chilled and just wondering if he’s behind . How about you?

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Dani2891 · 26/02/2018 16:15

And how old is your little one ?

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Teabag2 · 26/02/2018 19:35

My little boy is now 3 years 9 months. I have a 6 year old daughter so was well aware of typical child development milestones. Initially at 2 years old he had very limited speech so I took him to the GP who said nothing to be concerned about and boys are normally late talkers but referred me to health visitor to be sure. At his 24 month assessment they flagged up his limited speech so referred him to our SALT team. He seen them for a few months, but because of his lack of eye contact and behaviours such as infrequent humming and lining up cars they decided to put him forward to the child development clinic.

He has had two appointments at the child development clinic, after the first they said he has some form of social communication disorder. At this point my little boy could label any number of objects, animals etc with full sentence echolalia but he doesn’t understand feelings and emotions. After his second visit to the CDC they suspect he has ASD. I’m not sure if the process is the same in England but just before Christmas both us and Nursery received 2 autism specific questionnaires one called a GARS questionnaire which asks all manner of questions to give them an index of how likely autism is. We got the results last week as ‘very likely’ and have now been referred to the autism triage team.

My little boy has no specific sensory issues and is not routine bound at all. I went in the Hanen more than words course which helped simplify our language around him. He is showing good progress but has not support in Nursery as he has no diagnosis yet.

I know what you mean about worrying about the future

Teabag2 · 26/02/2018 19:53

Sorry that was such a ramble! Putting the kids to bed at the same time. SALT always said to me keep doing what your doing like trying to build up joint attention, following 3 word commands like doll, jump in bath with dolls house figures. We did all these activities and yes he can now say a lot more words almost 2 years on but we still have no support.

Trying to potty train at the moment Confused

Dani2891 · 26/02/2018 21:28

Thanks for your reply , I’ve just fallen asleep putting mine to bed 🙄 I’ll have a look at the GARS questionnaire. On another thread someone has suggested some books that might help me arm myself for a possible future diagnosis. Joint attention is a struggle-it’s only really when I sing to him , do you have any suggestions for that? And his understanding doesn’t seem at all as it should be , if I asked him to get his shoes he wouldn’t , but he knows what shoes are and can say it. 😕 I’ve gotta it him a place after Easter at the nursery up the road from my house where my other son goes to school but hey won’t change a dirty nappy (wet they will) so I need to have a go at potty training too 😖

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Dani2891 · 26/02/2018 21:34

www.asd-forum.org.uk/forum/index.php?/topic/11686-gars-questionnaire/

I just had a quick read through this when I googled it-may be of interest to you x

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Ellie56 · 27/02/2018 02:44

I just don’t know what to do, I’m in tears daily so worried about him and the thought of things always being hard like this.

Yes I remember feeling like this and as though you 're banging your head against a brick wall all the time, but it did get easier eventually.

When our youngest son was 3, he had virtually no language, no social skills, exhibited bizarre behaviour and regularly had meltdowns.He was referred to SALT and had input from them for many years, which helped.

When he went to school at 5, he still had poor language skills, no social skills and had no idea how to behave. He regularly lay down in assembly, refused to co operate in class and used to hit the staff and other children.

He was diagnosed with autism when he was nearly 8. By this time the hitting and lying down in assembly had stopped, and he was conforming more at school, but we noticed his behaviour at home was much worse . It was as though he was only just managing to hold it together for the time he was at school and then all hell let loose when he got home. It didn't help that at that time his regular teacher was seriously ill, so the class was having one supply teacher after another - and children with autism need routine and stability and to know what's going to happen in advance.

By the time he was 11, our son bore no resemblance to the little boy he had been when he first started school, although he still struggled with language, was emotionally immature and still needed a lot of support at school.

He went to a fabulous secondary school where they put in virtually 1:1 support and he settled really well in a very short space of time. Although he still found things difficult at school he did really well and all the behaviour problems we had up to then stopped. I believe this was because he was given the right support at school by people who understood autism and were experienced in this field.

As the years have gone by, we have met many challenges, but our son has continued to develop in his own pace. Mainstream FE was a disaster as the staff had no clue about autism and just expected him to fit in with everyone else. Not surprisingly the placement fell down and our son was diagnosed with an anxiety disorder 2 years ago.

He is now 22 and in a specialist college for students with autism. He is making fantastic progress, doing things that a few years ago, I would never have thought possible and his anxiety has subsided. He has learnt to cook, he travels home on the train by himself, and is doing work experience dealing with the public.

I absolutely believe everything he has achieved is down to the education, training and support he has had from his earliest years. It's not always easy to get what your child needs, and you very often have to make a nuisance of yourself and become "difficult parents", but the right support at the right time from the right people makes all the difference.

Dani2891 · 28/02/2018 11:56

So really early intervention is key. I've ordered Early start-autism book from Amazon to read up and arm myself ready for if it is indeed Autism. But being such a broad spectrum I'm just wishing we could see someone sooner to narrow it down. My mum still swears there's nothing wrong with him and that he's just behind. Its very difficult having so many people chipping in when actually they're not professionals in the field-I dont mean my mum coz her opinion is valued its just nursery-speech therapist and health visitors saying might be autism.

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Ellie56 · 28/02/2018 16:00

Well meaning friends and family used to tell us there was nothing wrong with DS. One so called professional told us on the basis of one hour's observation that he definitely wasn't autistic. Hmm.

It's frustrating having to wait so long to see someone. It's also frustrating being told there's nothing wrong when you know there is. You have my sympathies OP. Can you ring up and ask to be put on a cancellation list then you might get an earlier appointment?

The NAS has a lot of info on their site. Maybe have a read on there and see if you recognise anything.

www.autism.org.uk/about/what-is/asd.aspx

LiefievdM · 28/02/2018 22:34

Thanks OP. These early times of "is it isn't it" questions and the long long wait to see specialists for assessments can be torture! What really helped me is getting in touch with local charities and joining in SEN playgroups or social communication groups. Have a look at your LA's local offer or google something like "autism charity (your local area)" or "social communication group". These charities usually also have coffee/tea sessions for parents to have a chat and it was (and is) really helpful for me to meet people in the same place as me. The charities can also help by signposting you to other resources.
And remember that if he does have autism or something else, it is a medical diagnosis not a label. You wouldn't say someone has been labelled with diabetes. If anything, having a diagnosis has helped us immensely in terms of people who had labelled my DS as difficult now understanding that he has a diagnosis and treat him and me much more kindly.
X

LiefievdM · 28/02/2018 22:42

Its very difficult having so many people chipping in when actually they're not professionals in the field-I dont mean my mum coz her opinion is valued its just nursery-speech therapist and health visitors saying might be autism.
Please don't take this the wrong way, but in all honesty, your mom is not a "professional in the field" either - even if you do value her opinion. Nursery see a wide range of children at all levels of development and their experience should not be dismissed. Speech therapists are actual "professionals in the field" in terms of social communication and interaction issues and their input in diagnostic assessments carry a lot of weight. Health visitors have daily involvement with assessing child development and it is a major part of their profession. Yes, nobody can diagnose at a glance, but these people are trained to see signs and to refer onwards for assessments for exactly that reason.

LiefievdM · 28/02/2018 22:57

Just a note on the nursery that won't change a dirty nappy: I'm pretty sure that would be against the equality act or something like that, as he has been flagged for assessment and clearly has special education needs. How is he supposed to be potty training when he can't follow instructions? But more importantly, I wouldn't count on a nursery who refuse to change a dirty nappy being caring enough to help you with his special needs such as early intervention with speech and language therapies, etc.
Nursery can help a hell of a lot if you get the right one. My ds is in a nursery that gave him 1-2-1 TA (even before diagnosis) and an Individual Educational Plan and they give him speech therapy in the form of picture exchange training and vocabulary training, attention and listening skills, etc. And they do change his dirty nappies.

CaptainKirkssparetupee · 01/03/2018 07:05

They will have to change it, it is against the law if they don't.

LightTripper · 01/03/2018 20:34

I know you are already seeing an SLT but I like this speech therapist on YouTube. She really explains what she is doing and why. Although she tends to be working with children without much by way of words at all, I think she has a lot of good ideas on just encouraging the to and fro of conversation, which might be useful?
www.youtube.com/channel/UCgVbPm0Vzu9k6LhcPrJWfZg

Dani2891 · 01/03/2018 21:08

Thanks for all the replies -I’ll have to look into the legality of the bum changing situation, I’m meeting with the nursery soon before a couple of settling in sessions. I know from experience of my eldest child going there that it is very good -he was in nappies when he started but never pooed there so wasn’t called to go and change him-strange tho isn’t it ! 😖
I know my mum isn’t a professional in the field but she’s seen him nearly everyday since he was born and I’m not being dismissive of the speech therapists / nursery team and health visitors but spectrum disorders is not their field-children are and children’s speech and language. What I’ve experienced is a lot of people suggesting different things when I really want to know what I’m dealing with so I can meet his needs and prepare for our future. Thanks for the link Light tripper I’ll check it out, we’re not seeing speech therapist anymore she did an ‘end of episode’ and said there’s nothing more they can do and that I need to keep doing what I’m doing . I’m waiting to hear back about a drop in at the child development centre where we’ll be seen in October by the multidisciplinary team so that could help.
Thanks for all taking the time to reply 😘

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BarbarianMum · 02/03/2018 13:21

If your son is in nappies when he starts nursery then they are required by law to change him as necessary. A good nursery will know this. All you need do is provide the nappies/wipes. They should also work with you on potty training if and when you think it appropriate.

Dani2891 · 02/03/2018 14:22

Hi barbarian-I can’t seem to find anything about the law on this online nor policies etc. Someone on another thread has mention disabilities discrimination but he’s not classed as having a disability -just not met that milestone yet . When I saw one of the teachers briefly the other day she said it’s rare they have to call coz they can usually clean them up but if it’s a massive poo then that’s an issue 🙄 so he’d be sat in it until me or my mother could get up there to change him. I’ll have to really nail her down on policy when I have our parent meeting prior to him starting

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BarbarianMum · 02/03/2018 14:33

He is covered by the DDA, even without a diagnosis, because it is not unusual for small children with disabilities to be undiagnosed. So if you turn it round, any nursery that refused to take children in nappies would be open to prosecution under the DDA because their policy would descriminate against children who are not ready to train (many of whom may go on to be diagnosed with a disability).

Dani2891 · 02/03/2018 18:34

So if they say no they won’t change a big pooey nappy then I need to quote DDA yeah? You’d think they’d already know this??

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CaptainKirkssparetupee · 02/03/2018 18:49

They probably do already know it, but they don't like it, so they won't follow the law without being pushed to.

Dani2891 · 02/03/2018 19:46

You’d think someone would have brought this up by now and made a fuss -the nursery’s been going for years!

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CaptainKirkssparetupee · 02/03/2018 19:54

99% of people don't know the law so assume the nursery is on their side.

dimples76 · 02/03/2018 20:43

I would recommend having a look at ‘the Right to Go’ guidance on the Eric website re toileting.

Dani2891 · 02/03/2018 21:09

Ok thanks all 😘

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