DD 2.10 autism diagnosis. Experiences please?

[Needingsomeadvice]

DD is 2.10 and we have had concerns since 20 months, when she seemed to regress suddenly. She has been and had ADOS last week and diagnosed with autism. They have not given us the more detailed report yet but we came home with a basic summary of the ADOS results.

Even though it was in my mind all along, I feel very shellshocked . I thought I might be OK with this after a year of appointments etc to get used to the idea but it's very final isn't it?

We have a lot to be thankful for as she is not too stuck to routines or rituals. However, she is very socially reluctant. She also barely puts 2 words together (and when she does it's lots of 'set phrases' and struggles to relay actual important information - such as where it hurt or what is her name or would she like juice), but she is aware of many concepts such as colours, shapes, animal noises etc. She has a good memory for songs and rhymes. So far, she is very upset when known plans change, but is still young so doesn't often know about routines yet.

I am feeling very concerned about what the future brings. I read on here and elsewhere about doom and gloom. I worry about her as an adult, especially when we are gone . I wonder how her life will turn out. I want her to reach her potential.

So...I suppose what I am hoping for is a bit of hand-holding and to hear of how it is for you if you are further along this road. Is there anything you wished you knew? I have an almost adult relative with ASD and she has had a lot of bullying in secondary school and has found life hard . I just wish i knew how to try and make it as easy as possible for DD.

Thanks for reading.

Thanks for your helpful reply bialy. That is what I thought too. At what point would you be looking at trying to get her a statement then (if anybody would not mind answering)? Am I likely to have trouble getting one? Sorry for all the questions.

Well, we applied for Statutory Assessment (ie a statement) when ds was just diagnosed at 3.6, so you can do so at any age.

Does she go to a nursery/preschool? It would be worth making sure they can back you up on her level of need. If the SA is granted, it will involve detailed reports from several professionals (Ed Psych, SALT usually) plus nursery/preschool. Parents report will count for something, but it does seem to be the case that local authorities will take it more seriously if the setting (nursery/preschool/school) report the difficulties too.

So I don't think 2.10 is too young to apply (other posters here have applied earlier) but imo only if you can provide evidence as above. If she isn't in a regular setting, perhaps put her in one and give it a few months, get the nursery on board in terms of supporting your application, and then apply.

It won't make a huge amount of difference waiting a few months - iyou get one sooner, great, but as long as she has it by the time you do school applications, that's the most important thing.

We applied at 2.7. We got refused statutory assessment. We appealed and they backed down at 2.11. We got a statement at 3.3. It was crap so we appealed again. This time we had to go to tribunal. We got proper provision via tribunal when DS was 3.11. So I would apply now. In my experience the process is dragged out so slowly you will have the evidence by the time you need it. You may need some time before you can face doing this but do look at special schools, speech units etc if any. They can take children from 2.5 and many children do well if they get high quality specialist intervention early and can then move on to mainstream later.

What do I wish I had known earlier? That the promised 'swat team' of professionals was actually a lot of under resourced, poorly trained people with little autism experience who would rarely turn up and over the course of a year fail to achieve a single positive outcome for my son. I wish I had started private therapy earlier. Its not doom and gloom - he is now doing much better with good provision, I see progress every week, which gives me hope. He's a different child than he was 2 years ago. To get progress you need people who know what they are doing. So put your energies into that whether its getting trained yourself, getting professionals in who can help, or finding a placement that knows what to do. You will feel better knowing you are doing something.

Thanks - that's really helpful.
She is starting her preschool funded hours at a day nursery from January (the one DS went to - I was working then). It is 2 minutes' walk away and is an 'outstanding' according to OFSTED. She will probably have to start very gradually as she doesn't really like being with other people and she is quite clingy. I have no idea how she is going to cope with being left - she is getting a it less panicky about other people though . She will then go to school nursery in September. I suppose I would have to make sure application was underway before then (ish)?

Hi, just thought I would share my thoughts and experiences with you. Firstly, a little bit of background about my own son. He was diagnosed with autism aged around 2 and a half by about 6 specialists after watching and observing him through cameras while I was in a room with him. This was after about a year of various other professionals referring him. He displayed all the classic symptoms and I had suspected since he was about the age of 14 months. He was completely non verbal, no eye contact, screamed a lot, did not point, didn't play with toys, jumped incessantly for most of the day, ran up and down the room, span around looking out of the corner of his eyes etc etc. As soon as he was diagnosed I was lucky enough to get a place for him at a special needs nursery who somehow managed to calm him down enough for him to sit still for short periods of time. I also met fantastic parents with loads of advice.
I decided i was not going to wait for specialist outside help and didn't even think about statements at this time. I just decided that i was going to be his teacher and I wanted him to be the best that he could be. To that end I spent hours everyday working with him after nursery. He started to talk after I decided to teach him to read. We would have structured play - wooden peg jigsaws, copying simple duplo patterns, clapping rhythms, etc etc etc. I would always sit opposite him at his level to encourage eye contact, and obviously always gave huge amounts of praise for any little thing achieved. He was always prompted to give eye contact. I would say the word 'eyes' before anything, including his praise.
Anyway, to cut a very long story very short, he was tested aged around four and came out about three years or above his age in all the cognitive tests. He started the local mainstream primary with no support and after just a couple of minor teething problems which were quickly sorted, settled in fine. I still worked with him every day after school on issues such as turn taking, putting his hand up, and constant reminders about eye contact (up until the age of about ten). He is now fifteen and in a mainstream secondary with no problems at all (in fact doing very well). He is funny, chatty and sociable and bears no resemblance to the little boy who was diagnosed. His secondary school does not even know of his diagnosis! It seemed to have been forgotten by his primary. Now whether he was a misdiagnosis, I have no idea, but it is what it is.
Anyway, my biggest tips would be to talk to other mums so you don't feel isolated and get good ideas to try; you will be your childs best educator (don't wait for the professionals); TURN OFF THE TV FOREVER (let them scream, mine did for at least 3 days) - you be the interesting thing to your child, be enthusiastic and make your voice full of excitement; keep trying and praising and look for and request that eye contact.
Lastly, ignore everyone who is negative about you or your child. I lost a few friends who seemed to think that their child may 'catch' my sons autism! Their loss! I have made far better friends with special needs children than I could have ever hoped for. They really are the nicest, most selfless people I have ever come across.
Thats all. I wish you lots of luck and love to you and your daughter. Stay strong, have fun and keep positive.

Thank you so much for your post ajmc67...sorry it took so long for me to get back. I thought I had posted but obviously not! I am so glad your son has such a positive outcome to his diagnosis. I am planning to mostly SAHM for now to enable DD to have me as her 'teacher'. I have the 'More than Words book which is very useful and have ordered the book that bialystockandbloom suggested for now.

DD is surprising us every day. She is now able to tell me what colour something is that she cannot see (e.g. What colour is a banana? - DD knows that it is yellow. She is also starting to request things such as milk, pudding, banana etc, which is a massive jump! I am feeling a lot more positive about her future now. I meet children in our support group that don't even talk. DD is also going to nursery soon and she will hopefully find that a nice gentle introduction to educational settings. I am more worried about her getting into the school system tbh, as my older DS has barely any communication between parents and school. I hope they will discuss DD with me better. In reception and nursery they were excellent though.

Hi op. Have read your thread and know it was posted a long time ago but am really interested to find out how your lovely dd is doing? I have a 2.9 ds who sounds really similar to your daughter at that age. Thanks.

I'd love to know too. I don't post here but read every day. My little girl was diagnosed aged 5. She was non verbal till 4 and in nappies. Still has her issues and obsessions but is coping well in mainstream with 1:1 support.

Your DD will be 6 or 7 now?

In my experience things get better after a diagnosis. Actually getting the diagnosis was the low point. My son was dx at 2.6 as severe. I had a panic attack in the car afterwards but have never had one since (and had never had one prior!).
The dx doesn't change who they are, it just opens doors to services and funding more quickly.
Be kind to yourself.

Sorry just realised this is an old thread.

Hi , my Grandson has just been diagnosed at the age of 9 yrs . His speech and walking were quite early and he communicates very well . He his however quite disruptive in class . I thought this due to the fact his Mum had a nervous breakdown and was in hospital for quite a long period .
He has a reading age way beyond his chronological age and is very bright . Personally I wonder if he has been misdiagnosed and have suggested to his parents that they get a second opinion .

Hi,

Well! I was just reading this and thinking about how it sounded exactly like us about 4+ years ago when our DD was diagnosed, and then I realised all of a sudden to my amazement that it was actually me that wrote it!! .

Anyway, for those that have asked, my DD is now nearly 7.5 years old, and although we have our challenges, I wish so much that I could go back in time to this person in the OP and show her how amazingly her little girl is doing now! Yes, she struggles with the usual ASD stuff anxiety, not fond of change, socially she has some issues. But this is a girl who is now speaking as clearly as her peers, in complex sentences. A child who is so very very observant and aware that nothing can get past her. And with the same zany sense of humour only now she can tell us what is funny.
Yes, our life can be stressful at times, and she does have full time support in her mainstream class, and will probably need support and awareness of her autism throughout life, but I now realise that she is very smart and capable, and I am often in awe of her.
Peaceandquiet hope this reassures you a little x.
Phoebesgift my DD didn't use a toilet until she was 5 either, but once she did, she was totally clean and dry within a fortnight. Didn't even wet the bed! So I think it was mostly around fear of change than any physical issue if that makes sense?
LegoLady95 how is your DS now?

Laylajaney It's actually really common to be autistic and be very bright and an early reader. If he has been diagnosed then it will most likely have been done with a multidisciplinary team and will not have likely been done hastily. It is really difficult to get even an assessment in most areas here the waiting time start to finish for a child that age is 24 months x

Thank you so much op for letting us know how your dd is doing- it is amazing to hear that she is doing so well x 😊 Our ds had ados last week and was diagnosed with autism. I have been feeling pretty emotional and bleak over the past few days so was lovely to hear such positive news. Thank you. Could I ask, in terms of support to give him now, what would you suggest? Did you do aba? Regular salt?

Needing thank you so much for the update. My little boy is the 2.10 and we're at the start of investigating is receptive Lang issues. I've been literally sick with worry.

You're post has helped me to see the future as less bleak for all of us. It's also helped me see that despite the overwhelming lack of support from gp I must fight on and get the right support for him x

Hi - no we didn't do ABA at all in the end. The things that really really helped my DD at the beginning were having SALT and autism specialists to introduce us and her to visual timetables and PECS. She calmed down a lot once she realised that her timetable showed her what was happening. She now has one at school but the one she uses at home is more of a weekly planner. It occurs to me that a lot of her anxiety was not making sense of the world. PECS, introduced by a properly trained person who knows how to introduce it (or you can buy a huge book) was hugely instrumental in teaching her how to request things. She didn't need it for long, but it taught her the concepts of communication, the stuff that comes naturally to a neurotypical child, and once she was using the PECS communication book to make a sentence and hand it to someone, it wasn't long before she just started saying the words. More than Words helped with practical advice too. And finding other families with autistic children and adults helped us to better understand DD. Getting the right support before school, who have then come into nursery before DD started and helped her get off to a good start. We avoid noisy and busy places and where unavoidable we use ear defenders .
Oh and apply for an EHCP and get it right, with lots of support from independent agencies, to make sure the provision is there and set in stone.

Thanks Needing from another parent starting down this road at just the same age. Sounds like your DS is doing really well which is lovely to hear!

Sorry, DD not DS!!