Is my 6 year old Son likely to have autism. Advice/help needed please?

[Kizzy123]

Hi mumnetters, i am new here and I am looking for some advice about my 6 year old Son's referral to a paediatrician. It is in 6 weeks time and im not sure what to expect? He was referred 3 months ago because of my concerns about the following:
Meltdowns-he seems to meldown and get really angry over the smallest of things, not tantrums but really upset and loses control (although he has not yet done this in school)
Eating habits-he eats the same things day in day out, he wont eat a sandwich because he doesnt like the meat/cheese etc touching the bread or he will not eat his meat if his mash potato has touched it or if beans touch the egg etc and he will balk if he tastes a lump in certain foods
Toilet habits-he goes days without going to the loo for a poop, its like he doesnt sense that he needs to go
School-he is behind with his reading, writing and maths, has a learning mentor and will soon be assessed if no improvement for a learning disability such as dyslexia
Vacant-he appears to be in his own world at times, i can call his name 4 or 5 times before he replies
Sound-he was very sensitive to certain noises and would get upset and cover his ears, he has got better with this now he is older but still struggles with things like hand dryers or busy restaurants
Questions-he will ask the same questions over and over again as if he needs to get the answer straight in his head
Very particular-his clothing must feel right, his socks must be on perfectly and before he puts on a coat he pulls his sleeves over his hands so they dont rise up above the cuff
Sleep-he takes hours to settle most nights and needs his father or I to lay with him for him to go to sleep
Clingy-he doesnt like to be away from us even to go to school as he says it takes too long until the end of the school day although he is happy and enjoys school whilst he is there
Touch-he will walk along and have to touch the wall or rails as he goes and has done this since he was small
Socialising-now this is what throws me about whether he could have autism as he does have friends in school. They are a selected few friends who he has been friends with for the past few years but he does engage in play and eye contact. Saying that he is not so sociable with adults and is very reserved at first, it takes him at least a few meetings for eg with his learning mentor for him to feel at ease
Speech-he has always been fine with his speech, he can easily hold an intelligent conversation and although he struggles academically he is really artistic and musical and loves history and listening to stories
Sorry for the long post but i guess what i am hoping for is for advice on what i can expect at our first appointment and also if any of your children who have been diagnosed with autism experience/d similar symptoms.

Many thanks in advance

A good few of the things you describe sound like my son who has high functioning autism. I know it's hard to be where you are now wondering is it or isn't it. Every child with autism is different and just because a child is sociable or has good eye contact does not mean he does not have autism.

Following as my Dd sounds the same except she falls out with friends and flaps when excited or with noises such as the hairdryer. She also sleeps and doesn't do the touch thing but does need us to go with her to the toilet.

To clarify though. Her older brother has ASD and we haven't yet met with anyone to seek a dx for her so pls do update us if you get a dx! (I know the school will not be backing us up either. What does your school say?)

Thank you both for your replies, how old was your son when he was diagnosed imaginosity? And how old is your daughter now PumpkinsOnTheMantlepiece?

School have never mentioned autism only maybe a learning disability as he is academically behind, they have said he gets on well with his 'small' group of friends and that he is a lovely boy that they have never had any behaviour issues or melt downs with! At first i found this reassuring as i believed if he can contain himself in his school environment then he must be fine although since researching ASD this is something I have learnt is common. At first i thought maybe it could be Aspergers but then I read that Aspergers is not diagnosed along side a learning disability so your post and your sons diagnosis of high functioning autism makes sense to me imaginosity, thank you!

School are aware of our paediatrician appointment in december and I intend to meet with them (senco/learning mentor/teacher) in coming weeks to advise of my concerns and what I will be discussing at the appointment and to gather their views.

I will definitely keep this post updated, i expect i will need a lot of advice and reassurance over coming months and I hope our experiences will help others too. I know a diagnosis will not change the amazing unique little boy that he is but it may help us to make sense of things.

Thank you x

Signs were visible in our DS from 9 months although I didn't know it at the time. A SALT had private suspicions at age 2 but didn't say to me for much longer. At 3.5 a paediatrician said "absolutely no sign of social and communication issues" which threw us off track for a few years. School said he was non compliant and naughty but didn't think autism when I asked them. He was diagnosed with ASD (we were recommended Tony Atwood books so Aspergers type issues seems to apply most to us) this year age 7 after big issues with food. We would have had no assistance if it weren't for the SALT interest in the eating and their offer of a social and communication assessment. I suppose what I'm saying is don't expect the school to notice unless your DS has big meltdowns and/or hits out at people. Good luck

Thank you tartanterror, SALT has not yet been involved with my DS but I will request that they are going forward, we too have big issues with food.

Thanks again

A lot of what you described was the same for my ds. He has been diagnosed with having a language disorder with secondary social communication problems.

I would write all your concerns down clearly, concisely and in bullet points to give your paediatrician so that you don't forget anything when you're there.

Before you go to the paed, speak to your ds teacher/ta/support worker and ask for some feedback on his behaviour and communication in school. Write these down too.

Also write the contact number for school and teachers names for the paediatrician as they may want to get in touch themselves.

Think about what it is you want from going to the paediatrician. A diagnosis? Extra support at and out of school? Do you feel he'd benefit from having speech therapy? Or attend any support groups run for children?

Do you feel your ds has improved in any way? When did you start to feel concerned about his development? Paediatrician will ask about your pregnancy and birth with your ds too. What is your ds good at? What does he struggle with?

A good paediatrician will ask you lots of questions and try and get a full picture of the past six years for your son. Paed will prob talk to your son too, maybe ask him to do basic things like draw a picture, ask him what he enjoys etc.

Sorry for such a long post!! Hope you get the support you feel you need

A lot of what you described was the same for my ds. He has been diagnosed with having a language disorder with secondary social communication problems.

I would write all your concerns down clearly, concisely and in bullet points to give your paediatrician so that you don't forget anything when you're there.

Before you go to the paed, speak to your ds teacher/ta/support worker and ask for some feedback on his behaviour and communication in school. Write these down too.

Also write the contact number for school and teachers names for the paediatrician as they may want to get in touch themselves.

Think about what it is you want from going to the paediatrician. A diagnosis? Extra support at and out of school? Do you feel he'd benefit from having speech therapy? Or attend any support groups run for children?

Do you feel your ds has improved in any way? When did you start to feel concerned about his development? Paediatrician will ask about your pregnancy and birth with your ds too. What is your ds good at? What does he struggle with?

A good paediatrician will ask you lots of questions and try and get a full picture of the past six years for your son. Paed will prob talk to your son too, maybe ask him to do basic things like draw a picture, ask him what he enjoys etc.

Sorry for such a long post!! Hope you get the support you feel you need

Thank you, that is really helpful. I will prepare as much information as possible including the contacts names and numbers.

Can I ask if the paed will speak with my DS alone or will i be able stay with him and if/when he is assessed does he have to be on his own? He is very reserved with new people and will not take kindly to being alone with a stranger?

I guess what I want from this is a diagnosis so that my DS will get all of the support that he needs in school sooner rather than later.

Your ds will stay with you, he won't be alone with the paediatrician. It's important your ds feels comfortable and relaxed so the paediatrician can get as much communication/ information out of him as possible.

The paediatrician should get as much information off you as possible then interact with your ds.

One reason I also suggested to write down your concerns was that I always found my ds listening to me talking to the paediatrician and I didn't really want him hearing everything.

There are usually toys in the room so your ds can go and play while you talk to the paediatrician.

Also, if you're in the U.K., my ds has always been weighed and height measured by a horse before the paed appointment. Just to check growth development. You might want to let your ds know first as he'll need his coat and shoes off(this was a bit of a struggle for my ds and he always needed 'notice' with things like this.

Not by a horse!!! Bloody phone!!! A nurse

Haha i was wondering what a horse was!

Thank you, yes we are in the UK in merseyside. I will certainly prepare him as we have had melt downs before when getting his height and weight done at previous appointments the worst time being when the nurse held his chin to lift his head to measure his height. He had a complete melt down which lasted ages :-(

This could be quite a lengthy process then? How long from the first paed appointment to a diagnosis for you guys? I know this will vary but just to give me an idea.

Thanks again, I really appreciate you all taking the time to reply.

We initially thought he was on the autistic spectrum. From our first paed appointment to diagnosis I think it was the second paed appointment which was 4-6 months after the first appointment. (We saw SALT in between and they passed on their info and feedback to paed). The paed also wanted some feedback from ds's nursery so the 4-6 months gap was 'necessary' to get all the information they needed for diagnosis. But I would imagine this varies from one person to another.

Also, on the first appointment we saw the paediatrician and one of her team. Then on subsequent appointments it was just one of her team we saw.
This happened again when we moved counties so I think there will be two members of staff there and possibly just one next time.

Also, we had a Forum meeting every couple of months where our ds would be discussed -along with other DC. Social services, a hv, a support worker, salt, paediatrician, senco from school were all there. I was able to go to the meeting and listen to what was said and tell them my thoughts on ds progress. It's literally a 10-15 time slot where you can listen to everyone come together and pass on any relevant information. You are only allowed in when they are talking about your DC-not other DC.

It might be worth asking if your local authority have these meetings and if you could be invited to them too. You would need to ask the paediatrician though as your ds probably won't be discussed at the forum at the moment by the sound of it.

We initially thought he was on the autistic spectrum. From our first paed appointment to diagnosis I think it was the second paed appointment which was 4-6 months after the first appointment. (We saw SALT in between and they passed on their info and feedback to paed). The paed also wanted some feedback from ds's nursery so the 4-6 months gap was 'necessary' to get all the information they needed for diagnosis. But I would imagine this varies from one person to another.

Also, on the first appointment we saw the paediatrician and one of her team. Then on subsequent appointments it was just one of her team we saw.
This happened again when we moved counties so I think there will be two members of staff there and possibly just one next time.

Also, we had a Forum meeting every couple of months where our ds would be discussed -along with other DC. Social services, a hv, a support worker, salt, paediatrician, senco from school were all there. I was able to go to the meeting and listen to what was said and tell them my thoughts on ds progress. It's literally a 10-15 time slot where you can listen to everyone come together and pass on any relevant information. You are only allowed in when they are talking about your DC-not other DC.

It might be worth asking if your local authority have these meetings and if you could be invited to them too. You would need to ask the paediatrician though as your ds probably won't be discussed at the forum at the moment by the sound of it.

Thats really useful to know, thank you! I feel much better knowing what to expect and what information to prepare.

Another thing we had was that the school's SALT did an observation at school with DS' at break time with peers. Very useful support for the diagnosis - the school had done their own observations and reported no issues!!

Also the teacher was asked to fill in a questionnaire. Although we were always told he was "fine" in class, the paed drew heavily on the signs of stress in the teachers report to support diagnosis!!

So it's always worth digging deeper as the school may not "see" problems or understand how behaviour fits into the bigger picture. Having info from different settings was useful and what made our diagnostic process simpler than for others - we had been on their radar for a long time so in the end had to wait less time once the diagnosis process started

Thanks, that makes sense. Can I ask if your DS was referred to SALT by your GP or was it through the paed?

We were referred to SALT via the community dietitians for eating problems. If it were not for that, I'm fairly sure that we would not have come to any professional's attention. The SALTs offered us a "social and communication" assessment a few times over (?) 3 years of contact. We adopted a wait and see approach as there didn't seem to be a compelling need for the assessment. Last year problems lead us to finally accept their offer. The SALTs referred us for the assessment which was carried out by a SALT (the one we had seen all along for eating!) and a Paed. The Paed took family history from us while the SALT did a formal assessment of DS separately in the play room. The Paed then did a brief physical exam of DS and including his hypermobility/posture alongside other usual checks of heart/chest/mouth/height/weight. They told us on the day that he met the criteria for ASD. In our case, although the Paed was there to "sign off", the whole diagnostic process was driven by the SALT. They co-signed the report. Our GP didn't feature in the process at all. However we were eligible for the paediatric route. New referrals once of school age may have to go via CAMHS, in which case you probably do need your GP to refer there. You may be able to self refer to SALT regarding eating and social/communication concerns and get them to support a referral/feed into the process at CAMHS. It might be worth starting both referrals at the same time as waiting lists are massive.

Thanks very much, everything seems so complex and overwhelming right now. I will definitely start the ball rolling in these areas. Thanks again, you have all been a massive help.

Our ds was referred to salt by the paed too. However, if you feel it's something your ds would benefit from, don't wait to see your paed in December- make an appointment with your gp. We had to wait months for an appointment with salt.

Try not to worry about it all. There's lots of health professionals and you've got the ball rolling with regard to the paed appointment.

The best thing to do is be prepared when you go in. Hope you get the support you feel your ds needs

Thank you, I will make an appointment with our GP at least then the wheels are in motion with that too.

Ok so we went to the paed appointment today and she has put my ds on the ADS pathway as the traits that we were concerned about do point to ADS although she did say that some things contradict this eg that he socialises well with peers. She advised that a SALT will need to be involved in the assessments and that she has known some people to wait 18 months for the next appointment but is confident we wont wait that long.

I am now confused as she said dont worry about the wait as a diagnosis will not change anything! So my question is what exactly does change with a diagnosis? If its just that we will have an answer to where our concerns have come from then im not sure what the whole point is unless the diagnosis is going to gain our ds a lot more support academically in school?

What did your children gain from actually getting the diagnosis?

Any advice would be really appreciated as I am just so anxious about everything right now. Many thanks

My ds has also gained from having the diagnosis. He isn't any different - you are autistic diagnosed or not but he also gets the legal protection, the ability to be able to say it's not deliberate misbehaviour but misunderstanding due to disability and most importantly Ds is glad he's autistic and not "a weird sad freak loser" that he use to call himself.

Our DS' diagnosis was fairly recent and we haven't yet told him so it is early days for us.

We didn't need the diagnosis for at home. We'd known the differences and dealt with them for years. The sole reason was because of the school. Ours saw a naughty boy and missed the ASD.

The diagnosis has made my job easier as the school are now open to working with me much more. Before they ignored me :(

Definitely proceed with assessment as I know of people who struggle to get one for years, or end up in limbo without a firm diagnosis.

There are quite a few people who are in schools that "get" ASD and who have support offered without a fuss. I'm envious but hope that we might be able to access a secondary school like that. We will need his diagnosis to help the school understand that he's different rather than naughty or uncooperative.

Good luck!