Referral for suspected ASD - what happens now?

[OhWouldYouJust]

DD3 - (3yrs old) has been referred for assessment as our HV suspects ASD.

I have felt for so long like a failure as i have no idea how to cope with her behavior or help her. Trouble is i literally have no idea what will happen next, this is all very new and daunting and i am hoping you lovely Mner's can help!!

Her symptoms are as follows -

Speech delay - her speech is at the level of around 12-18mths old, she can speak some single words, but sentences are completely incoherent. Weirdly though, she can count clearly from 1-14. And visually identify those numbers.

Potty training - we are now on our 4th attempt... going better this time but she gets very emotional at the sight of her potty. We are managing to wee in the potty 90% of the time but pooing - she poops her pants every time and doesn't show knowledge of it occurring.

Sight problems - (now i don't know about this one but HV thinks it could be a factor) she has a lazy eye and an aversion to strong sunlight in the lazy eye.

Diet - She will not eat any fruit or vegetables. She actually screams and makes vomit noises at them - she also has food obsessions almost - 3 months ago it was dark chocolate digestives, at the moment its mini cheddars, when i say obsessions i mean refusing to eat food other than this and literally screaming at the cupboard they are in.

Social skills - Unfamiliar people - she will close her eyes and try to hide herself, i.e. in the school playground she hides under my coat with her eyes closed and does the same if someone she doesn't know comes to our house.
She will do this for the entire duration they are within her sight.

It is extremely difficult to get her full attention or make eye contact with her. She does not like to look directly at people.

She will only play with certain toys - toys with wheels on, or toys that speak. If her sisters even attempt to touch them she goes into meltdown, screaming, shouting and crying. She also has major sharing issues. If something is hers she does not like people touching it.

Emotions - Whilst she is mostly very very loving towards family members, i.e. cuddles kisses, she gets very upset over small things - for example she had a crying fit this morning because i was breaking her weetabix up with a spoon.

If adults i.e. me and her dad are talking she will get very angry and shout and scream until we stop.


If anyone could offer some advice, do these problems sound like ASD? What can we expect to happen now she has been referred?

Thank you in advance

[marchduck]

Hi OWYD, you are completely not a failure! - please put that thought out of your head! Some of things which you have noted would be worth mentioning. Do you know if your HV referred to your GP or a Developmental Paed? Either way, take a make a list of the behaviours you have noted, and take to the appointment.
It depends on where you live, but as I understand it, most areas have a multi-discpinary approach, where several specialists are involved in the DX. This is done through a number of observations/interviews etc.
All the best to your DD & you

[iluvmababyz]

hi owyj

when our dd2 turned 21 months her speech slowed down and we had noticed other differences so asked for her 2.5 year development check and she had it just after her 2nd birthday. at first they had suggested she may have mild asd. in the few months we waited for her referal to the paediatrician consultant she stopped talking completely, and regressed with her development. she is now 2 years 7 months and only 11 days away from her diagnosis.

when we saw her consultant she refered her to autism assessment team which included speach and language therapy, occupational therapy, portage service, educational psychologist which have all been assessing dd individually and are having a meeting in 9 days time to discuss and come to a decision and we will find out 2 days later.

we have asked her consultant on her last visit what she thought and she mentioned classic autism but it has to be a joint decision. we dont know a lot about asd but the assessments are different in different areas it seems that dd is going to have a lot of support from a few different services

just a tip which we found really helpful - we made a diary of absolutely everything we could think of which included everything about her development and behaviours as well as her like and dislinks basically tried to write as mcuh information as we could about her which really helped her consultant so that when we got the type up from her first assessment it was 6 pages long - my hv said usually they are only a couple of pages long so it really helped them to get a good idea

all the best to you and your family :)

[WilsonFrickett]

I'm in Scotland and our dx process is different, so won't comment on that but firstly ((hugs)) and second some advice.

It will do no harm at all to assume she has ASD. I know that's probably hard to read, and in no way am I diagnosing over the Internet, but there's lots of ways you can help and lots of strategies you can adopt. And if she doesn't get dx'd it won't do any harm IYSWIM. Start with the NAS website. There's also a course called Hanen more than words, or time to talk, see if your LA offers it or try to get hold of the book.

Push for speech therapy now - again, no matter if there's a dx or not, speech therapy will help.

And yy to a diary. And honestly? If toilet training isn't working, stop for a couple of months.

Keep posting, lots of good advice here. I've had so maybe am not being particularly helpful right now :)

[Ineedalife]

Hi OWYJ

I think you have already had some great advice and just wanted to add, ASD is not caused by your parenting. I think you must be a good mum to have noticed all the things your LO is struggling with.

I agree with the poster who suggested keeping a diary and also take what you wrote in your OP.

Tbh, there are some red flags for ASD in your original post but i think you already know that.

Remember she is still your lovely little girl whether she has ASD or not. Yes you will be on a different journey but she is young and it is the very best time to start helping her.

I would also agree that you could implement some strategies used with children with ASD ime they work well with most little ones and they certainly cant do any harm.

Most importantly be kind to yourself, try to get a break sometimes so that you dont lose yourself in the assessment process.

Good luck

[chocjunkie]

OP, i guess you have been referred to a developmental paed. Usually, in the first appointment, you will discuss your concerns, paed might ask about your Dd 's development etc. It is a good idea to make a list with concerns & development of your Dd.
Sometimes, the paed likes to use a wait and see approach (e.g. another 6 months) before deciding on diagnostic tests (such as ADOS). Has your DD ever been seen by a Salt? If not push for referral or self refer.

Hothead posted some very good links - i esp second schramm's motivation & reinforcement. Would also recommend looking into ABA.

Another book which is highly rated here is 'more than words' by hanen (cheapest from winslow publications). It will teach you how to communicate more effectivly with your DD.

Dont expect too much from 'the system'...

Have you thought about applying for Dla? It would give you some extra cash to fund private therapy (unless you are very lucky, you wilk not get a lot on the NHS).

Also, wilk your Dd start school next year? Then i would also get the ball rolling regarding a statement for school.

Your situation probably feels overwhelming atm but ut will get bettee.

[OhWouldYouJust]

Sorry i have only just seen all of these replies - thank you so much for all of your advice it is very much appreciated.

marchduck - We have been referred to somewhere called the Meadow Centre, haven't really been told much else but the local council website has this description -

At the Meadow Centre we provide multidisciplinary assessment advice and support for children and their families with significant and complex medical, developmental and/or social needs

Chocjunkie -Yes she is due to start nursery next September, I mentioned a statement to our HV and she said once the diagnosis is made we can proceed with that. Am off to hunt down that book...

Another thing i was altered to reading through the threads here is the walking on tip-toes thing. DD also does that, never realised it can be an indicator for ASD

iluvmababyz - That's a really good tip about the diary, will begin that today thankyou.

WilsonFrickett - Yep have already stopped the potty training again for now, i think we are going to approach it again in a month or so with a brand new potty, try and make it a fresh start for her.

Ineedalife - Thankyou for your kind words. I think the inital shock that she was being referred just felt very daunting. I have since had some advice from a friend of a friend who has just been through the same process and she basically said the same as everyone here.

Thankyou so much

[OhWouldYouJust]

*alerted to not altered

[OhWouldYouJust]

HotheadPaisan -Thankyou for all those links, looks to be some really helpful info there