5 year old just diagnosed as autistic

[sunface]

my now 5 year old dd has just been diagnosed as autistic. her traits are very subtle apparently (lack of empathy, lack of expressive language, lack of focused play etc) she has had speech and language issues since she was 2 (even went through a phase of not talking at all), her language has been assessed and she is within the average range but it sounds very immature.

i'm a bit bewildered by the lack of support post diagnosis to be honest, we were told and then pretty much left to it with a list of contacts and signposts to follow up ourselves.

I just wondered if anyone else is going through this at the moment. It all feels a little bit surreal and without incurring the wrath of some, i was wondering who you chose to tell not from a 'we're embarassed about it' point of view, but more from a 'how can telling people benefit our dd'. The health professionals have said it's worth telling the school as although there are no learning issues at the present, there may well be in a year or so, the same with the social side of things.

sorry a bit of a rambling post, but would appreciate any insight into other experiences and how people dealt with it going forward xx

Your second paragraph is unfortunately all too common as to what happens post dx. You are your child's best - and only - advocate.

Is DD on anything like School Action Plus currently?. Is there any IEP in place for her?(Individual Education Plan). I would meet with both her class teacher and SENCO asap.

You need to think longer term with regards to school.

With regards to school anyway I would start applying now to the LEA for a statement of special needs. Ignore any naysayers on that issue. I note some health professionals have already mentioned that there could be some learning and social issues in about a year or so; pre-empt this as much as possible by applying for the statement and she may well be having problems now in school. Do not wait a further year!. IPSEA's website is very useful www.ipsea.org.uk.

Would also suggest that you apply for DLA (use the Cerebra guide to help you with this as well as asking on here as that form is very hard going).

Also read the NAS's website and keep posting on here!

Hello sunface and welcome to the SN boards. We have a 5.5 yr old son with high functioning autsim, although he was diagnosed at 3.5. It takes time to 'come to terms' with the diagnosis, if thats possible. We are 2yrs on and i think i fell apart for 6 months. You need to take care of yourself as its a tough time for you all. With regards to school I would say you should definately tell them. It would be worth you asking for a meeting with the school SENCO, and talking things through. They are probably aware your daughter has some issues, and the school may be written to by the paed anyway, to inform them. Your DD will need extra help in school, and you may need to consider applying for a statement of special educational needs. When our DS was diagnosed we were sent away, no leaflets nothing. Contact the NAS and find out about support groups in your area. We go to a different group now, a very small local group for all disabilities, not just ASD and we have met some lovely people and made a couple of friends this way, other parents that 'get it'. It has taken time, and life is still very hard some days. Good luck to you, and be kind to yourself.

I agree with Attila that You are your child's best - and only - advocate.
That's her catchphrase.

I'd add that immediately post-diagnosis was, for me, overwhelming emotionally. I knew of my child's difficulties, I suspected Autism but it still winded me.

I shared with very few initially until I got my own head around it.
Then, I think, the thing is to prioritise the issues.
There is so much to take in with Autism; the speech, social skills, sensory processing (sometimes), Education, movement issues (if present), sleep, family implications etc etc.

As Education stuff takes a while, I would start there. Get the appropriate supports in place for her.
Good luck

Thank you Attila and dietstarts, knew i could rely on mumsnet to get some support! The diagnosis team had said it was up to us whether we wanted to let the school know, but i'm in agreement with you both and think we need to let them know now to avoid any potential issues going forward. good idea about contacting them and talking to them face to face too. Will check out the NAS support in our area, and the IPSEA website, thank you both. She doesn't have an IAP at the moment, but will follow that up with the school when we let them know. In terms of getting a statement of special needs, who do i contact regarding that? does it come via the school?

Thank you porridge lover. main issues at the moment are the speech and social side of things. No movement issues present and sleep is thankfully ok, once we can get her to sleep ;-)

Will get things moving with school. Yup i felt the same way, although I had my suspicions, to hear it spoken/confirmed out loud knocked me for six. It's all very overwhelming

hiya sunface and welcome. I have a dd about to turn 8 who is also also subtle and who has had speech and language problems from a young age. Most people would be shocked and stunned if they knew she had a diagnosis, she appears pretty fine, if a bit bonkers. Our diagnosis is not official yet (still waiting for multidisciplinary assessment) but we were given a working diagnosis a couple of weeks ago. Funnily enough I am fine about the diagnosis part, although it's pretty surreal. So I have barely told anyone while I get my head around it (er long process...). I have only just told my sister and Dad. I told school straight away, they have been supportive of the diagnostic process. School are good at making all the right noises. But then it's like a vacuum. No support actually happens in school that I can make out. This is the part that I am struggling with because I have a Dyslexic daughter who I've had to fight hard for to get even the most mediocre accommodations in place. The fact that I am going to be doing this now constantly for two kids is frankly the part that gets me down. It is like a crazy power struggle with school. I have no idea whether applying for a statement is the thing to do, my school will be setting up an IEP soon and I guess we have to give this time to fail before seeking further support in the form of a statement. But I also live in the most awful of counties for support for SEN (Herts). It is a hard fight, every step of the way, give yourself time to get comfortable with the diagnosis before taking things further but do speak to school. Hopefully you will find your dd's school helpful and accommodating and able to implement help. Keep coming back here for support, it is a mine of amazing help.

ask the senco to call you, and arrange a meeting. They will draw up the IEP, which should outline your DD's support needs and the support the school will offer her with these. You could ask the school about the statement, but you as a parent have the right to request a statutory assessment of your DD. You would need to call the SEN dept in your local authority and say you want your DD to have a statutory assessment of special needs. Dont let them fob you off, the school may want to start this process but you can discuss this with them at a meeting. Does your DD get help from speech and language therapy ?You could also call your local parent partnership service. There is one in every area, ours were helpful and can also offer you advice with the statementing process, and may be able to support you in meetings with school if you want it. Also ask the school if there is an autism support service in your area? we have one, they work with children with ASD who are in mainstream settings and ours are great. Hopefully you will be able to access some support this way. Attila is right, you are your DD's best advocate.

Sympathies. I remember that phase. I had given up work round about the time my DS was diagnosed (I needed to do that because he was raising merry hell at school and needed a lot of input) so I made it my job to follow up everything and ask for everything I could. It seemed like a fulltime job in its own right! You might want to take things more slowly.

Definitely good idea to tell the school. Some schools are more supportive than others but they may well want to help. Have a meeting with the class teacher, maybe ask to speak to whoever is in charge of special needs too. They may be able to support your DD with social development, and with any problems she encounters along the way, and they may also know how to get extra support for her and what?s available. DS?s class teacher told me about a social skills group that the school librarian had told her about and I asked all the professionals about it until eventually someone (the language therapists) knew what I meant and referred us.

It took me a long time to get my head round the diagnosis even though I was expecting it, and it takes time to find things out and organise things. Be kind to yourself meantime. Sounds silly but I took lots of naps!

oh thank you ladies for all your support. I am going to contact the school this week and set up a meeting. Thankfullly the SENCO at the school is really nice. There is also another girl higher up in the school who is severly autistic so they won't be new to the subject.

Handywoman i like your 'a bit bonkers' description, that fits our DD really well. I 've always just said she's very eccentric bless her! I'm sorry you are having such a struggle to get support, it just seems so unfair that there isn't more in place to help kids in this situation, as it seems to be more and more prevalent.

Dietstarts we were with speech and language but as my dd was assessed aas being within the average range, she no longer sees them. They work on 'impact' so untill it becomes an issue at school they won't intervene :-/ We are in Scotland but i think the support structure is pretty similar to England from what i've read.

Kleinzeit i like the sound of the social skills support, will see if there is anything available where we are as that is one area where my dd really struggles and i'm anxious about how her peers are going to react in the next 6months as they develop in this area and my dd remains the same :-(

Statements don?t exist in Scotland, there used to be a process called a Record of Needs but that?s been abolished too! Here?s a good website with info about the Scottish ?Additional Support for Learning? system:
enquire.org.uk/
They have a helpline too, if you ring them they?ll send you a brochure all about it.

DS?s social skills group was a joint effort between the NHS and the education authority, for kids in mainstream schools. The school had to agree to him going out once a week, which they were fine with. DS's peers were mostly pretty accepting (and they had rather a lot to accept!) but the group was a big help. It ran in 10-week terms, and over the years he's done half a dozen sessions.

thank you kleinzeit! That's fantastic, appreciate your help. Will contact Enquire and get some info. Struggling to find any local support groups.. will keep looking

Thank you poltergoose. I think it would be good for my dp to do some reading into it all as like yourself, it was me at all the appointments/assessments and at the actual diagnosis appointment. Unfortunately in Scotland, the Early Bird Plus scheme isn't available, i'm sure there must be an equivalent though. I'll keep digging!

Hello
Nothing to add.. My boy is at the other end of school ( he's in year 11)
Just wanted to say hi and welcome

Kids in infant school can be really lovely in their unquestioning acceptance of their classmates. If teacher says 'just be friends' then they will.

Enquire are brilliant, loads of clear information. As someone said, we don't have statements in Scotland, in theory it's all supposed to work in partnership with schools and parents in harmony so no need for the legal 'compulsion' of statements. In reality however... Let's just say I wish we had statements!

School will want to set up an Additional Support Plan (ASP) or Individual Education Plan (IEP) depending on your DD's needs. An IEP is 'stronger' if you like.

You should start a diary. Keep note of what was said by who. Keep an eye on who is following up with you and who forgets to return your calls. IME some schools just 'get it', others don't. It's often easier all round to move to a school that gets it, than to keep pushing a school that never will. I don't mean that you have to make that decision now, I know things are overwhelming at the beginning, but your diary will help you see in a few months what's been happening at school and help you understand if you want to change.

Sorry, that sounds like I'm telling you to start looking for another school - I'm not! Just saying start making notes for decisions in the future.

thank you wilson (love the name!) great idea about the diary. The school she is in, has one girl who has quite severe autism and another boy who is deaf and has aspergers. The advantages of this are they are aware of the process i guess, but i'm worried the resource may not be available.. guess we'll find out when we talk to the school....

Schools can ask for extra resources from the education authority, though obviously there?s only so much to go round. So do feel free to ask the school for what you want, and be clear with the school about any difficulties your DD is having and help you think she?d benefit from. Parents asking for things can help to strengthen the school?s case. No harm in being a squeaky wheel?..

The NAS do seminars for parents and carers called the ?help? programme. NAS List of current seminars in Scotland They used to do workshops for parents of kids with recent diagnoses, not sure if they still do. Call the NAS helpline and they?ll tell you if any are planned for your area, or if you join NAS their newsletter should announce them.