ASD - what was your DC like at 2 years old?

[laurabatty]

Hello all. Our DS has been diagnosed with Global Development Delay and is showing signs of autism. As you all well know this is a time of enormous anxiety and uncertainty and I'm just looking for others who have been in a similar position to share their experiences. I have found that reading this board - real life and non-sensationalist - has helped over the last few weeks. Just ploughing randomly through the internet looking any new info about autism has not - far too scary.

Had your DC been diagnosed at 2, if not, what signs were they displaying and did you know it was autism? What could they do/ not do? What did you do at this point in terms of activity, around the house etc? Did you go into panic mode and try to frantically start teaching them in the hope that all would be ok soon enough? What is your DC like now? Have things turned out better than you hoped when you first realised things weren't as they should be?

Thanks all.

Hi Laura, sorry to hear about the dx. DS1 was dx with GDD with ASD at 2.3. It was the HV who pointed out his lack of communication at his two yearly check up.

I agree, google was the scariest place to be in the early days of dx all doom and gloom and it has really not turned out like that. I tend to stick to this place now, far nicer.

To answer your questions, obvious signs were delayed development, late reaching milestones, lack of eye contact, pointing, joint attention, no language but that was obscured by the fact that he was extremely premature. Round about when he was two, his development plateaued and that's when we started to worry that it was just more than delayed development.
We did go into panic mode and went and bought lots of books to help him speak, lots of toys for him to play with. Unfortunately none of that helped at the time as we didn't know what we were dealing with. Then coincidentally I found this place and the advice from here has helped a lot.
DS(2.9) is a much happier child now, lots of eye contact, lovely smiles and for the first time yesterday he copied something I did, so things are getting better.
We have been doing ABA for a while now, but we are hoping to increase the hours of tutoring in the next couple of weeks and are very positive that DS will benefit from him. We are not out of the woods yet, but there is hope.

Dd2 was given working dx at two and full dx at three.
She had lost speech, would do the same thing over and over. She walked on tip toes, flapped her hands and screamed a lot. She rarely slept and was delayed in all physical milestones

sorry about the grin there, I did not mean to be insensitive to you.., but really things have not turned out to be as bad as when we first got the dx. Offcourse we don't know what the future holds, but we found that things got better once we stopped stressing about whether he was learning anything during our interactions and just started enjoying our time with him. This helped to reduce his anxieties allowing him to progress and in turn help us feel less stressed as we can see him progressing.

DS1 had a working DX of sensory processing disorder at 2. He had little speech, no pointing, massive issues with light and sound and food textures. Unbelievable tantrums, and delays in learning self care, that sort of thing. No sense of danger, terrible sleep patterns.

He's 6 now, DX of high functioning ASD at 4. He toilet trained latish (about 5 years) still has interesting sleep patterns and isn't yet reliably dry at night. He has obsessions and meltdowns BUT. He copes in mainstream school without support. And he's fantastic all round. HTH, at nursery age they were talking about special school!

Hi my DD is 2.7, she has very few words, she is very much in her own world+ignores other people even if they are dancing about right in front of her, she doesn't respond to her name every time but has improved in last few months at looking sometimes when we call her. Her understanding is poor, she cannot follow simple instructions such as 'get your coat' etc. She does not have very good eye contact, none with strangers and only occasionally with us. She licks everything, put all her toys to her mouth, completely ignores other children, loves to jump, skip around and is always on the move! She has no dx tho, paed wants to see her again in 6months, she didn't think asd as not much regression? I'm not completely convinced of that though. I understand they don't like to diagnose too early+dd had no other milestone delays so I go back and fore a lot. But mostly tbh I do think its asd. Its a very frustrating, confusing time and you are left constantly worrying about their future etc. This site has helped me loads, I've had amazing advice from vitamin supplements to text books and other ideas like pecs. Without it I would be lost as SALT is taking forever on Nhs.

Bizarre interests (vaccuum cleaners, plugs, wires not interested in toys at all).

Cried at toys with eyes or that made noises.

Poor eye contact. Was talking / walking at 11 months, lost it two months later, and didn't start talking til 4.

Didn't like wearing clothes - realised later this was to do with labels / seams until later so ended up wearing things inside out.

DX at 7 of HFA.

My dd is 2.7 we are waiting on ados assessment. She was late to roll over (11 months) didn't walk til 18 months. Late to talk then suddenly developed a huge vocab in the space of 2 days out of nowhere. She struggles with pronouns though. She becomes hysterical when lawnmower or Hoover is on hates loud noise. Dislikes other kids near her but is better with older bigger kids. Is like a mini dictator very demanding, everything has to be her way or no wah. Has horrific tantrums hitting, kicking and spitting. Is on melatonin as hardly sleeps. Very fussy eater, very fussy with clothes.

She will make eye contact with people she knows and likes, and she does point but her joint attention isn't great. She has some rigid routines she has to do, and discipline absolutley has no effect on her!

At 2 my DD was just learning to walk (low tone). In retrospect she had terrible joint attention and wasn't pointing/responding to name but i didn't know what to look for at the time. She started spinning round and stimming after she was 2.5. She was pretty content. She had hundreds of clear words and knew all her letters and numbers etc, loved singing, she was also quite affectionate on own terms. She lost her words aged 2.10 but is still pretty affectionate and interactive on her own terms.

DD assessed as just slightly into severe category of ASD.

She is doing pretty well at 5.5 but clearly has ASD now, at 2 we just thought she was "gifted"

Laura, sorry to hear of your situation. It's a tough stage you're at and I thank god I'm through it.

Tbh things started to improve drastically when I started to realise that the only real difference that can be made to my ds' prognosis was my input and management and investment. A hell of a burden but at the same time liberating.

The biggest thing I have done to help DD is to really work on my bond with her, lots of tickling, singing (she really responds to music) and connecting with her in the ways she responds to..am a big fan of Intensive Interaction..it has really helped and she is now quite a loving wee girl and is starting to say some words.

However I wouldn't go by my DD at all as she was such an unusual case that the neurologist was about to ask for international advice on her before her chromosome microdeletion showed up, she is no way typical and had all the professionals baffled.

So I am not that much help but have been in your situation and understand. You are at an advantage though in that you found this place and are much more knowledgeable than I was when DD was that age.

Fanjo I was an II practioner, it was my absolute favourite part of the job and the results were amazing!

The single biggest thing I have had to do for DS1 is change the way I do nearly everything! I'm naturally a ball of chaos - I never planned, things just happened as and when. And he, of course, needs to know HOW MANY shops we're going to, which ones, which way we're walking, he's learning to compromise and I'm learning a modicum of organisation!

Simple things like visual strategies and timers have made a big difference, as did restrictive bedding (couldn't afford a weighted blanket, so he still more or less sleeps swaddled, he gets inside the duvet cover and wraps it around him.

I met Phoebe Caldwell at DD's school and she was wonderful, I really felt we were on same wavelength :)

was quite starstruck :)

I did the training with Dave Hewett. I have a crush

I've worked with people with severe ASD since I was very young (first volunteered at 13) and it's the way I instinctively worked - but for years it was very unfashionable, and in care home scenarios we were often so understaffed that everything was super rushed. I wish they'd roll out the training so that people understand that II can be a part of personal care, or feeding, or anything at all - it doesn't have to be separate!

It's so rewarding, the relationships are amazing.

/endtangent

they are, DD loves now to grab my hands and clutch them to her face for a big face cuddle and says "love ooo" :)

Oh, that's lovely

Ds1 was diagnosed at 3.5yrs but I'd started looking into autism when he was 2.

At 2 he was very passive and had no interest in people. If you left the room he wouldn't notice. He had no useful language skills and had never really babbled. He didn't understand instructions or respond to his name. He had somehow taught himself to read (hyperlexia) and would type in his own name and password to use the computer. He was happiest when left alone.

At that age I didn't have a clue how to teach him anything. I couldn't see how you could teach a child who didn't understand anything. The best help came from the SALT he saw when he was 3yrs old and from the portage worker the SALT referred us to.

Ds1 is now 11yrs old and is almost unrecognisable to how he was at 2. He's in a mainstream secondary school where he's doing very well in all subjects except for his much-hated PE. :o He was discharged from SALT after his assessment at 6yrs showed that he was actually ahead of a typical child of his age. He has problems with his fine motor skills, which means he finds writing difficult, but types his schoolwork where possible. He has poor co-ordination and gross motor skills, which is mainly why he dislikes PE so much!

If someone had told me back then that one day ds1 would be as he is now, I would never have believed them.

Ds2 had a diagnosis of autism when he was 2yrs old. At that age he was known as "Hyper-Boy" because he seemed incapable of staying still for 2 seconds. He was always running, climbing and jumping. He hated wearing clothes and spent most of his time wearing just a nappy. He had some language skills, but they were mainly names of shapes, colours and numbers. He didn't really understand instructions and spent a lot of time with his hands over his ears or wearing ear defenders because he hated noise.

He was either very happy or in a raging meltdown, and could switch between those in seconds.

I used a lot of the tips that we'd picked up from ds1's SALT sessions, eg keeping language very simple. Ds2 also had a portage worker, who brought various toys and books to use with him.

Ds2 is now 9yrs old. His spoken language is quirky but very good. He likes to use long words wherever possible. He still hates wearing clothes and still doesn't like loud noise. He is no longer hyper and is happiest when curled up under a table reading a book. He's doing much better than I thought he would, but there's still a long way to go yet.

Dd was diagnosed with moderate to severe autism a week after her second birthday. At two she was silent, she didn't laugh, smile, talk or cry really. She would wander backwards and forwards tapping objects.If you didn't feed her she wouldn't eat, she had no means of communicating that she was hungry, thirsty, cold or dirty. If I sat her down in a room and left, she'd still be there when I came back (I once watched her sit there for more than three hours) She would sleep badly but would lay awake for hours not making a murmur. She was like a doll, in fact someone once mistook her for a doll because when I carried her she didn't snuggle in and didn't make a sound and didn't look round.
Now she is 9 and an absolute joy tbh and functions at a far higher level than her diagnosis suggests.

DS was diagnosed on his second birthday. He had no speech (he had lost all his words) spent his whole time banging cupboard doors, would scream if we left the house, scream if I left him for a second. He had no play skills, had only just started walking and would not socialise with anyone.

2 was just the start of my concerns. HV picked up on speech delay, he had words, but used jargon a lot. He couldnt 'pretend' to feed the doll, he took this literally and went to fetch food from the fridge.

My main concern at this time was his eating, he ate literally nothing, was later found to be severely anemic.

He hated wearing clothes or shoes. He didnt play with toys, just lined things up.

He also failed hearing tests at 9 months, which was thought to be responsible for his delayed speech. They thought he had 'glue ear'

He also failed eye tests and was referred to specialist.

HV referred him to paed, SALT, OT and dietician.

Despite being referred off in all different directions at 2 years old or earlier, he still did not receive his dx until he was 5 and half.

He has a dx of ASD, hypermobility, oculomotor defeincies type 2 and sensory difficulties. He also suffers with anxiety, eating phobia, continence issues.

He is now 8, some things have improved, some havent.