Is there a support thread for those waiting to be diagnosed with Asd?

[MissMalteser]

Hi everyone, I posted my thread in chat today about my worries re my 2 year old son who is currently awaiting a developmental assessment, was advised to check our this board and it seems there are a lot of us in the same rocky boat
I was wondering if we could start a general chat thread, somewhere to offload our worries with other parents going through the same?

I’ll join you. My DS is much older (9) and we have a provisional indication of ASD. Currently awaiting ADOS and ADI.

I probably won’t know any more than you, but expect I am going through the same things.

Hello!
I've got four DC all at different stages in the process. The two smallest ones were with us at an appointment for DS who is already diagnosed and the consultant told us to get them referred. Our house is... challenging!

Our youngest is having SLT and they're waiting to get further information on him before they reach a diagnosis. We qualify for the 2-year funding for nursery and they want to see reports from a childcare setting.

Wow hawkmoth 4 😮 can I ask what ages are your dc, my dd has seen the slt once but she referred him straight on for a developmental assessment which isn’t until June so we’re just hanging around at the moment waiting on that
Springerlink can I ask what ados and adi are? Still working on my terminology lol

hello
I've 3 and half yrs currently waiting for assessment after almost 18 months of pushing and frustration any advice tips how to help him especial his speech as is non at the moment

@MissMalteser ADOS and ADI are used by professionals. The scores in those and other tests can be used to say your child has autism or other conditions.

Autism Diagnosis Observation Schedule.
ADOS is a structured observation schedule, not a test, it examines the child's behaviors and how the complete tasks.

The Autism Diagnostic Interview-Revised (ADI-R)

Google for more info.

Hi Zen, I’m afraid I don’t sorry, we are pretty much zero speech also, he can recognise and say banana sometimes and can recognise the word no but that is it.
I still talk to him pretty much all day long, describing what we’re doing etc but tbh I’m not sure what he takes in, on bad days his concentration level is shot but on a good day we sing nursery rhymes with actions like round and round the garden, Incy wincy spider, he will recognise once I start singing and anticiapate what’s to come, then he’ll react by alternating between putting his hands over his ears and hitting me until I stop, or laugh delightedly and want to play it until he wears himself (and me) out 😂
Thank you blanktimes I’ll look those up :)

12 8 4 and 2.

12yo is having ADOS in May.

It took over 2 years for the 8yo's dx and the 4 yo goes to panel in November... 13 months after she was put on the list.

It's a very exhausting process because to get anywhere you are gathering evidence of all the 'negative' aspects of your children. ABC charts, triggers, meltdowns, behaviours. So my tip is to write it down, file it (keep a file) and just hand over copies. I can't keep it in my head because it's too depressing focussing for too long on anything other than their strengths.

@hawkmoth I can understand that, it can become all consuming, analysing every little detail of the good days and bad days, worrying about family events or places where he’ll have a meltdown, people withholding treats trying to coax him to say thank you 😡 and having to constantly explain how unhelpful it is...
I didn’t realise it was such a long process, I can’t bear the thought of ds not receiving the support he needs while waiting on a diagnosis :( is it the same for all areas? I think we will wait to see how the developmental assessment goes in June, can you receive a diagnosis if you go private?

Some (most?) local authorities will only accept NHS diagnoses, BUT some professionals work a few days for the NHS and also have private clinics.
That means that the professional will be believed by the local authority even if you have paid for their assessment.

Do research that carefully before you pay. Your GP can refer you as a private patient as well as an NHS one.

t can become all consuming, analysing every little detail of the good days and bad days,
It gets to be a pattern, you do it throughout education being that parent, applying for DLA if their needs are above their peers, exam concessions for GCSE, transfer to or application for PIP if needs are severe enough, further ed or uni SN support, you get used to it.

You also see shedloads of things your child could not do at a young age no longer being a problem when they are older because of all your hard work getting them the help they needed when it was most important

Our SLT said that we should wait for some sort of acknowledgement, so in the treat case, not an actual please or thank you but a squeak, gesture or nod. I guess it gets him into the rhythm or communicating even if there aren't any words.

Also remember that school are supposed to help based on need rather than diagnosis. Some schools are better than others at this.

Hi, can I join you? My youngest is 3y 10m and has his first paediatrician appointment in July. I also have a an 11 year old who has aspergers syndrome and a nearly 10 year old, a 7 year old and a 4 year old.

I've been convinced my youngest has autism from when he was 3-4 months old so this appointment has been a long time coming. He is at a special needs preschool at the moment but will be going to mainstream school in September. He is verbal but mostly one word at a time if he wants something, he doesn't chat or have a conversation. He has no sense of danger and will climb anything and put everything in his mouth. He runs like the wind and has been potty trained for about a month although he will quite often see on the floor repeatedly if something has upset him. He is exhausting and can be quite violent at tines, especially when I am trying to stop him escaping or try and get him to go to sleep. It seems to be mostly me getting kicked, bitten and hair pulled out and occasionally his brothers but I'm worried he will do it at school to other children.

@elliejjtiny he need to learn what is and is not acceptable he will be praised if he is doing good and be firm if not is not going to be easy you will need a lot time on your hand or you can do research for ABA if is for you. mine has no potty training as we gave up after 3 months as he has zero speech and non wet feeling what so ever. biting and pulling has stop tantrum has been less. still climbing and putting everything on his mouth.

We are going through ADOS and pre-school visit in the next month for DD (nearly 4). By this time next month we should know the outcome. Feels weird!

Hello - we are also on the waiting list for ados for ds who is 2.9 - the same paed who sits on the ados panel has seen him twice already and told me she thinks its classic autism, however the fantastic private salt we see thinks not so I guess we wait and see.

ABA? Really?

Hi everyone sorry for going awol this week, dh and I went on holiday and I have to admit the break done the world of good, ds stayed with granny and I was so worried it would be too much for him but she came to ours so he stayed in the same routine and it went well :) I was so looking forward to seeing all the dc again but ds didn’t really seem to realise we’d been away 😂 After about 5 minutes he tottered over to give me an Eskimo kiss which is what we use instead of kisses lol
We have our next slt visit tomorrow, At the moment she is trying to work on building his eye contact and concentration so we’ll see how that goes
Ds new obsession is taking me by the hand and leading me all over the house, he literally wants to do it 10 times every hour, I keep on giving in as he seems to get really upset if I don’t but his childminder has mentioned he does it a lot too and I’m worried he’s going to start taking up too much of her time and she’s not going to be able to keep him on 😩 I only work part time at the minute but it’s income we really need so I’m not sure how we would manage without it if his behaviour gets too much for any childcare providers

Hi everyone how are we all going?
I know this thread has quieted down a bit but I think I’d still like to use it as a sounding board if that’s ok?
I wanted to ask if anyone has noticed a lack of coordination in their lo’s? Ds can walk ok but nearly looks drunk when running, very unsteady and runs with his hands out in front, I think This helps balance him? Can’t walk up or down steps by himself and will often want to hold my hand if the surface isn’t completely flat (on grass etc) it made me quite sad to watch him struggle so much compared to the other children :(

Just poping back on here for a bit of a rant really. After being told my DS was being referred for further assessment for ASD over a month ago, I called to chase the appointment today. I was told that he is marked as having been discharged after the first peadiatric assessment, despite being told in the appointment that he was being referred and that a disgnosis was highly likely. There is no report from the first appointment yet, so no reason given for the discharge.

I'm confused/angry about this. I'll be livid if it means we are back at the bottom of the waiting list again.

That sounds massively annoying Springer: hopefully "just" an admin cock-up. Do you have the name of the Paediatrician you saw? You may be able to find a phone number or e-mail for them so you can check with them directly?

MissMalteser failure to hit physical milestones was actually the first thing we spotted with DD. She was very late to pull to stand (not until after 18 months I think), late to walk (nearly 2) and was always very hesitant on play equipment, didn't want to jump, etc. etc. As a baby she hated having weight through her legs - if you'd try to hold her with her legs on the ground she'd pull her knees right up to her chest. She went downstairs on her bum for ages. To be honest I wasn't that bothered by it as it worked and was safe. But she has only been using alternative feet to lead going downstairs for a few months.

We got a block of 10 physiotherapy sessions when she was about 15-18 months I guess which were great to get her standing/walking. After that we found Gymboree great. It took a lot of work as we had to encourage her to do things that were a bit outside her comfort zone (to begin with she just wanted to sit and play with the balls, though she always loved the bubbles and parachute games, so we never had any trouble getting her to class), but now (just 4) she loves to climb and jump, she is super-fast on her scooter, and properly got the hang of her balance bike about a month ago (having really not wanted to go on it at all until a couple of months ago). She is still not that confident with swimming but we're working on it. She does ballet lessons which she loves, and yoga and dance at school.

I still wouldn't say that she is as skilled as her peers in anything physical BUT she really enjoys it which is all we wanted, because it means she can take part in everything without getting too left behind.

I just noticed people up thread were asking for tips on speech. I really like Walkie Talkie Speech Therapy on YouTube - she has lots of ideas/examples of games to encourage speech and break it down into little achievable steps. Mainly aimed at toddlers rather than older ones, though there may be videos for older kids too.

Hi guys!
Don't mind me butting in?
I think I'm in a slightly different situation to all of you? (I'm new to mumsnet and don't understand all the lingo, but am I right in thinking you are mostly speaking of your sons? Please forgive me if I'm completely wrong about that!!)
My daughter is 6 and a half, and I have been fighting her corner for 3/4 years now for a referral.. she was late with a few milestones but I first put that down to the fact that she has an older sister and lots of older cousins etc.. but she atruggles with many things that i saw in my cousin with aspergers, so it clicked to me that she could have autism.. i just want to make her life easier. anyway, i finally managed to get the school to refer her as I was coming to the end and didn't know what to do.. she had got to the stage of hurting herself constantly and I was terrified.
And now we are playing the waiting game. She has had her first appointment with the child development place.. and they think there is definitely grounds for an assessment of autism along with adhd... so when that finally comes through it will be so good to finally have some answers..
She goes through weeks of good days.. but then can have a good few weeks of bad, even awful days with major meltdowns and in general it's just very hard. I also have a 9yo and a 2yo.
I guess I'm just ranting? But anyone got any advice on how to get through the bad days? X

Springerlink that’s rubbish, definitely sounds like an admin mistake though? Can you ask them to ring through & speak to someone on the other end to rectify?
Thank you lightripper I will check out the YouTube suggestion, I read somewhere that really small (2-3 word) sentences spoken then repeated after 10 second in the exact same format can be helpful, gives them time to think & digest what you’ve said, then back it up in their head, so we’ve been bouncing along with that, I’ll be honest we haven’t had much success- ie none 😂
I’m feeling a bit down & dispirited at the moment, I reached out to a few local charities in my area (we’re NI) that I was told offer services pre diagnosis, but the first one tried to sell me the aba programme right off the bat & the second didn’t return my call, I’m feeling really isolated & out of my depth & could really do with chatting to some rl people who are going/have gone through the same thing :(
Mrsg yes I think we are mostly taking about ds’s (darling sons) but don’t let that put you off! I find on the bad days I mostly just give up on trying to do it all and focus on the very basics, so yes the house is a mess & no errands get done & we eat pizza for dinner but you know, sometimes they turn into our best days, just giving in from the offset & going with the flow takes the pressure off & i congratulate myself at the end of the day that we all made it through 😂

I have a DD MrsG, though she's only 4! We also have runs of good days and bad. I usually find bad days are when she is tired, ill, or going through a big developmental change, so really just try to give her plenty of rest and ride it out.... Not very useful I know!

@MrsG31811

"I'm new to mumsnet and don't understand all the lingo"

www.mumsnet.com/info/acronyms

@MrsG31811 - I am talkig about a son, who is 9. When we finally get through with his assessment, I'll be back here talking about a daugther (almost 5). It's less clear cut with her, but I still want to have it looked into.

Thanks for the advice all. I am now waiting for the peadiatrician's PA to call me back to explain what's happening and have asked the SENCO at school to follw up as well. She is so convinced that he will get a diagnosis that he is in intervention groups already.

Oh ok.. d/s and d/d.. got it!
So when I first mentioned ASD to dd's reception teacher I was brushed off with "oh she's still so young", ok yeah she was only 4 but as a mother you notice more right? Also I was told that her teacher worked with ASD children for a long time and also has a daughter herself with it. So while she could see why I was thinking along those lines, she wasn't so sure herself.. so I was frustrated and starting to doubt myself.
When she was in year 1, a TA of hers started to notice traits and did some research into it. It was with her help, along with the fact that I had gotten into quite a state about it that.. (as well as working with a family support worker, and a camhs referral.. and multiple hearing tests!!) that finally had the SENCO send through a referral... that was an obstacle in itself as apparently there are separate referral forms for girls?
It's difficult because although I see all of her traits, she is VERY good at masking them, obviously it's not intentional but she copies her peers behaviours in certain situations so sometimes it looks like she is not struggling at all...
Sorry I'm going on a bit. Anyways, so today I finally got an appointment through for Stage 2 ASC assessment.. can anyone give me an idea as to what I'm going into? What do i need to be prepared with? I'm still so confused by all the information I have come across myself.. I'm so glad I found this board, so many of the parents at school.. even some of my own closest friends, just see her behaviours as naughty and bratty.. and often try to get involved on disciplining her and it's so hard!
Thanks for listening