Can anyone offer advice? re: Referral to Paediatrician regarding suspected ASD for dd age 3.11

[Chilimama]

DD2 who will be 4 shortly started nursery in Sept. She has always been introverted and preferred her own company but always seemed happy so myself and DH considered her just to be the quiet one out of our children (we also have DS, 9 and DD, 5).

About 4 weeks into her first term the nursery teacher asked to speak to me regarding how I thought dd communicated with others and if I had any concerns about her hearing and ability to understand what people are saying to her. I told her that she had always been quiet but I knew she understood what was said to her appearing to have selective hearing and conversations would appear one-sided unless the subject for discussion was about something dd was interested in when she would become very vocal and animated.

The teacher said that while her vocabulary is very advanced for her age she thought it a good idea to refer dd to a speech & language therapist. The referral came through quickly and dd was seen several times with a meeting held in late November at which the therapist said she thought there was a possibility (along with the class teacher) that dd was on the autistic spectrum.

Now seeing dd in her class I can see that she is not like the other children, she won't get involved with class activities, needs 1-1 help with all things (apart from going to the toilet, putting her coat on etc....) that the other children do themselves, she has a basket of cat toys which calm her down and has to carry them around with her. She is responding well to Makaton symbols so we use these at home as well as this is the most effective way to communicate with her.

I have a little bit of experience with ASD as my sister, who I posted asking for advice on last year, has aspergers as does my cousin but I was unprepared for this. Nonetheless I was very pleased the nursery were being so active in getting referrals and help for dd.

An educational psychologist was then brought in to see dd and she also said there are definite indicators of some forms of autism but there are also some things which don't fit and could be due to other factors. The headteacher, teacher, SALT and ed. psych have all said that dd needs constant help and has her own key worker who is with her all day. They all recommended that we try to get her diagnosed asap as she starts school in September.

The headteacher told me that at present I cannot get my hopes up about dd attending mainstream school but the school have told me provided she gets diagnosed and funding there is no reason why she cannot go in Sept.

So now the referral for the Paediatrician has come through and I am feeling unsure what to expect. Dd has also been referred to occupational therapy for her sensory needs but although the nursery have been wonderful in getting all these referrals so quickly we feel kind of lost and in limbo about what happens next.

Can anyone who has been in this situation offer any advice please?

What can we expect to happen at the appointment? Do we need to ask any questions?

The issue of a statement has also been brought up by the nursery head and the teacher in charge of the reception year. The head said this is very important but can only be done if we get the right result from the Paediatrician in order to get funding for help for dd at school.

Now I am confused as well and feel guilty as I almost want dd to be diagnosed with something so she can get the help she obviously needs. If she doesn't what will happen to her? Will she slip through the net and not cope with school? I also feel terrible that I didn't realise sooner that dd was struggling, it honestly didn't come to light for me until I saw her in the classroom setting but I can't help feeling I should have got her help sooner.

I know I am jumping ahead but I can't help worrying about the if's and but's. My dh works long hours so it's me that has to attend meetings alone and while my mil has been supportive she can't offer any advice really so I would love to talk to someone who has been through this process. Any advice would help.

If you have read this very long post then thank you.

It sounds like you have lots of great support and advice already. However I would advise you yourself maybe to start the stat assessment process off yourself now rather than waiting as it takes up to 6 months.

Thank you for your advice. I am totally clueless about the process and didn't know it was possible to do it myself.

My problem is although the nursery are supportive I feel unprepared for the assessment by the Paediatrician as I don't know what to expect and no-one can tell me what will happen at the appointment. I am guessing they will read the reports already made and ask me questions?

I do appreciate how lucky I am to have a nursery which is on the ball though.

The Paed will want to know about developmental history to date ect. Such as age that your child started to sit up, eat solids, walk. Look at IPSEA and ACE on advice on applying for a statement.

You should be able to get a booklet on statutary assessment from the LEA ( or parent partnership).
It may be helpful to write down your childs developmental history and any concerns you have (my mind always goes blank!) When ds was assessed they did a general medical check (listened to heart, checked relexes that sort of thing) but mostly asked questions and read reports whilst ds created havoc played.

Writing things down is a great suggestion, thanks magso. My mind always goes blank as well, usually because dd is up to something or wants to sit on my lap and hide in my arms.

Wasuup I have downloaded the document regarding SEN for parents which has a large section on assessments etc... so will have a good look through it later with dh and will look in the other places you have suggested too, thanks.

You can apply for a statement without a diagnosis but you will need to carefully document what extra needs you child has. If your nursery, OT and Speech therapist are prepared to support this, ie write reports stating her needs then you have a much better chance of succeeding. It takes at least 6 months to get a statement in place so it is a good idea to start now. You need to write to your LEA requesting a statutory assessment. The nursery should have the address or the website IPSEA has pro forma letters.

Regarding the Dr's appointment, it's def a good idea to takes notes in of what is concerning you and the school, again see if they can write a letter for you to take with you when you see them. The dr's will probably do assessments and you will almost certainly NOT get a diagnosis on your first appointment.

Sorry, DS2 has woken and I need to go. Good luck though!

As others have said, the Paed will probably ask you lots of questions about your dd's development and about any concerns you have. I vaguely remember also being asked about the pregnancy and birth too, and whether there had been any problems with those.

At our appointments (2 boys with ASD) there were also some toys set out for ds to play with. The Paed was looking for things like if/how ds played with them, and whether they tried to share them with me or otherwise communicate with anyone in the room.

There was a quick physical check-up too. Mainly things like listening to their chest, checking muscle tone etc.

Hi, i have been through the same process with both my dd's (dd1 has Aspergers and DD2 has ASD).

As others have said its best to write a list of all her behaviours/traits before you see the pead, they will ask you to describe your dd from birth to now.

Dd2 was observed playing with toys such as a toy telephone and a tea set (to see if she used spoke down the phone or pored a cup of tea using the tea pot), she was seen by a SALT who also used toys to see if dd2 would speak (at the time dd2 was non-verbal).

It took 2 years to get a dx for dd1 and just over a year for dd2.

Thanks to everyone who has replied.

I spoke to dds key worker today and she said we can get together with the class teacher closer to the appointment to talk about the difficulties dd has at nursery and at home so I have a clear idea of what she needs/gets help with.

I am really lucky to have so much help from nursery, I know. It took my mum years to get help for my sister so I am really thankful for the assistance we are getting from those involved with dd.

Thank you FlyingDuchess for your message, I do feel a bit overwhelmed but can see the benefit of early intervention and have no intention of rejecting any help offered to us at this present moment.

My main problem is that my husband seems to think that there isn't a problem and (due to previous bad experiences with the local mental health services) hasn't a lot of faith in "the system". This is where mil is stepping in and helping me to demonstrate exactly when dd needs additional help and support. Having said that he is a great father to all 3, he is just at work most of the time and doesn't get to see all of dds different behaviours.

Seeing these messages has helped me a lot, especially as today dd hasn't had a great day and we are both exhausted.

Welcome to the board, you will find lots of support here.

Depending on the expertise of the paed - ie if generalist or specific interest in ASD - paed might make noises on the day - or might give nothing away and effectively defer diagnosis to a multi disciplinary team. So ask what assessment process will consist of. In our case was paed, speech therapist and clinical psychologist. SALT saw DS at nursery and at home and psych just at home. We then had meeting about 3 months after 1st paed contact when we got the formal diagnosis and this was confirmed in a letter. In our area it was clearly the psych who really made the dx.

We've had a terrible time with statementing [DS ASD 3.3] and i suspect things will only get worse as fierce budget cuts are expected. In our area getting a statement for children who do not have physical disabilities or very severe LD is almost impossible without first exhausting and failing every other option first. Many councils will take a graduated approach and drip in support bit by bit. Schools have some say but it depends more on the attitude of the council. There is a legal right to go to mainstream if that is what you want provided it doesn't unreasonably disrupt education of other children - which in most cases with sufficient 1:1 it won't. But look around your area, neighbouring areas, private and mainstream. IME no-one is going to tell you about anything other than the cheapest option. Many councils delegate most of their budget to schools and will say the schools already have the money to put the support in without a statement. So there is huge variation from area to area. In my area ASD is barely even considered a disability worthy of specialist support even for children who are non verbal / MLD.

You should have a Parent Partnership officer - they usually have their own website for each council - who can give advice. But make sure you get your own copy of the SEN Code of Practice so you can check procedure is being followed.

Good luck with the appointment, we had a good experience with the NHS dx process.

Get in touch with your local NAS branch for local on ground info. Or post your rough location on here and people will usually pop up with advice.

Oh and ask for referral to speech therapy, ed psych and portage asap even before dx. There aren't enough resources around and you need to be pushy. Statementing can take 6 months - more if you have requests knocked back or have to appeal - it will take us 14 months to get the statement we want. So despite what professionals tell you you can never start too soon, you will have the evidence by the time you need it.

Just a thought, why not go through this thread to sort out points to discuss with the Paed? It is a long time since we had DS's dx but I believe that now it is done partly by questions and partly by observation. In our borough it would not only be Paed who would be involved with dx but a small team, although Paed is probably the one to formally dx. Try to be as neutral as you can, its easy to be over positive or over negative, I know its not easy though.