ASD for beginners please

[Yorky]

DD1 will be 4 in November
She currently attends private nursery 3 mornings a week where she seems happy but in September will move to 5 mornings at DS1's primary school in foundation 1
She has never been a good sleeper, crawled oddly and walked quite late, and we didn't see her run until after a few chiropractor visits when she was 2. HV noticed at 2 yr check that she had very few words so referred to SALT but we've lived in 3 counties since then and I'm sure you know more about the referral headache than I do.
She doesn't 'get' conversation and will echo what we say back to her instead of answering questions. She is quite a big girl, and resorts to thuggery with her siblings too often. Frustation based tantrums are common, but getting less unless she's tired
She finally got to see paed on Weds last week who agreed with us that her language/social skills were well behind for her age but her shape/number/colour recognition were ahead and she suggested autism and gave us a leaflet.
I know enough of autism to not be surprised at her dx, kind of relieved that someone agrees with us and maybe we can use the label to get DD more help, but I don't know what to do now...

We also have DS2 (2yrs) and DD2 (3months)
DH says he has found DD1 easier to deal with since we saw paed as there's a reason for DD1 being like she is, but I haven't found that. I've pretty much been in a foul mood since then, and not entirely sure why.

If someone can explain to me what she has, and what is likely to happen next I would be very grateful

I'm so sorry you have had this news. A DX or even a possible DX affects everyone differently. I'm sure there's often a stage very much like a bereavement where you grieve for the child your DD is no longer going to be. How people deal with that can be quite different. There's no right or wrong way, you may need time to come to terms with it.

Have any interventions been suggested? I found More than Words book by Hanen (try Winslow Press for cheapest source) really useful. Others have also used ABA. What help will she get in school? Have you read up about Statutory Assessment for a Statement of SEN?

www.winslow-cat.com/more-than-words.html

I will try to help but I am no expert!

Have you got an official diagnosis of autism? Autism was suggested by my Pediatrician when my DS was 3, but he wasn't diagnosed until he went through ADOS testing this year - he is 7. His diagnosis was delayed as he unfortunately got leukaemia.

From what I know, my Pediatrician suspected autism. The diagnosis got put off for 3 years because of the cancer, but then we were referred to the local MAAT team (Multi Agency Autism Team). They met me without my son and took a lot of history. Me and my son attended an ADOS assessment some weeks after - they tried to get him to play with stuff. Then 2 people went to observe him in school. I was called back to the Clinic alone some weeks later and told my son was autistic, given a leaflet and that was it.

It's not as bad as it seems as my son has other difficulties, has been Statemented since he was 2 and is already in a Special Needs school so it's not like I had to approach a mainstream school or the local authority for help.

You are in a foul mood because it still a shock, even though you knew it, deep down.

You need to consider schooling, any help you are entitled to (including Disability Living Allowance and you DO NOT NEED A DIAGNOSIS to apply for that).

I will stop waffling now

Thank you both
I will order that book

She has her place at DS1s primary school nursery for September and both DH and I found the attitude/approach of the Head of foundation reassuring when she did the home visit and we were trying to explain DD1s 'individualities'. I actually found it very frustrating that the paed appt was in the 1st week of the holidays so I couldn't arrive early to collect DS1 and have a chat with her.
DH is the SEN governor for the school and even though we don't rate the head she is due to retire in the next couple of years

How do you get from a suggested dx to an actual dx?
What is ABA?
The Dr has suggested we continue seeing the SALT and she is going to refer DD to the early years team but I'm not sure what they do
Why would DD be eligible for DLA? I can't see how we will incur extra costs for her

Does anyone have any suggestions for how to explain to her siblings? Or how to stop her being such a thug - it isn't simply lashing out in frustration so much as just hitting 'because she can'

Thanks again

Don't know about ABA sorry.

We went from a suggested dx to actual dx by getting a peadiatrician to refer us to the local Autism team. They then collected reports from the school, SALT and school psychologist (plus others). Then these reports were reviewed and the Autism team decided if my son could go ahead for assessment. Take up every referral you are offered, even if you are not sure what they can do for you.

The DLA is your call whether to apply for it or not but it is awarded on having a child that has additional needs compared with a NT (normal/Neuro-typical) child of the same age.

I didn't see how I would incur extra costs initially, but my son lashes out. He has broken 6 portable dvd players in the last year. He has broken 2 tvs. He wants a toy every time he goes out. He will only wear certain clothes. He has hospital stays. He will only sleep in a certain type of bed - which cost more than a normal one.

Re: explaining to her siblings. For now, I would say DDs got a few problems and we need to give her a little leeway. I had invaluable input from a behavioural therapist. My son still lashes out and I don't know why but his siblings know how to cope - mainly by ducking and not fighting back . There is only so much you can control but you can be given strategies to cope and help.

I have copied and pasted the definition of ABA.

"Behaviour analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behaviour is followed by some sort of reward, the behaviour is more likely to be repeated. Through decades of research, the field of behaviour analysis has developed many techniques for increasing useful behaviours and reducing those that may cause harm or interfere with learning.

Applied behaviour analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behaviour."

For e.g. you say that your dd is hitting her siblings. the way you can cut this down would be to reward her behaviour with her favourite activity or treat when she is behaving well with her siblings. If she likes being praised, then praise her lots no harm in even going OTT if she understands you to make the connection that nice behaviour equals treats/rewards and very soon you should be able to fade the rewards/treats until the good behaviour becomes the norm. you will have to ignore the bad behaviour and not acknowledge it, change the environment as such that she doesn't get a chance to misbehave. it is not easy but it does work.

Thank you dev9, I didn't even know what ABA stood for which made googling it a bit tricky!

Hi There, I don't post very much but I do read this thread a lot - I really ought to put some time aside to join in more ....... I was much like you with the DLA thing and then I got thinking about it. My son has soiling issues so I have to replace at least 2 packs of pants per week. He cannot abide being in the house for legths of time so the petrol costs and entrance costs to activity centres/softplay/zoo/playparks (which he actually needs to develop motor skills) reference books, conferences, courses to arm you as a parent with as much info as you can get. Special clothes and toys even special pencils and pens cost more money than normal. I have also had to fork out for OT equipment to help my son. We have to pay for ABA Therapist too and also ASD charity memberships and annual short break with ASD charity too. I could go on and on and on but you DO spend lots more money supporting a child with an ASD.

I found that I greived for the child I though I had when I got his diagnosis then went into fight mode to get him the school and the care he needs. There are lots of people to help here with your journey so stick around

Getting a full DX seems to vary depending on which part of the country you are in.
All seem to start with a visit to the GP to be referred to the right person though. You can go armed with the information you had from the Paed and ask to be referred for a DX. It can take quite a long time to get an appointment though.

For now you can assume that she is autistic and read about how autisitic children see the world and all sorts of behaviour strategies.

There is a lot of general information on the NAS website
you could also try ambitious about autism
young minds
autism support network for some more general information.

As for the bad mood, as someone else already wisely said, you are grieving for the loss of the child who is not autistic. Be kind to yourself and give yourself some time to come to terms with it.
Remember your DD is still the same person and now you know what the problem is you can educate yourself and others on the best way to help her.