My "query ASD" kid, waiting on AON assessment etc

73trix

We've applied for AON and should have a date by year end/ new year.

This is prob year 2 of this emotional journey as while I had concerns early on, my little man then developed a neurological condition e.g. seizures, which muddied the waters somewhat. Had the first professional "naming it" appt in June 2016. Fast forward and post seizures, he made leaps and bounds and ASD went out of my mind given the progress, however, we have still kept with the AON, as better to assess either way, but for a while there, I wasn;t really worried about ASD anymore. Reasons? Language had ( I was told ) reached "normal limits", imaginative play was getting there, he was very social, fun, cheeky, wants to involve me in his play, warm and affectionate and very clever - so I was believing in my heart that ASD was off the table.

Here and now. More heart sinkers as time passes. He's nearly 3 and while at home seems a fairly regular kid ( but he is the one and only and we may have normalized his quirks) in social settings among peers, he is really standing out.

We were at a party over the weekend, lots of young kids. Bouncy castle. Having fun in bouncy castle. Then a few more kids. Little one, similar age wants to engage. My lad - " out of the way, XX" and got fed up and wanted out. Spent most of the afternoon walking around the garden after him as he avoided everyone else. Couldn't mix at party at all. Found it a bit stressful and I got very sad.

Swimming pool. Mixed feelings. Likes the water and playing in the water. Baby and tot pool. Lately, when other kids come into the pool, he wants out. he might look on and smile at said child, but wants out.

Took him to a parent and tot group. He tends to wander off on his own.

Started him in playschool a few months back. He loves going and I have told the staff that he is a bit delayed etc with play/ social skills. 2 months in and a staff told me that he interacted with a little boy and was clearly excited about this and telling me. I kinda thought, oh God, this is the first time he has?

So, yeah. Reality is coming back to bite me in the bum and I'm so sad. I had convinced myself that his presentation was blurred but as he gets older, he is standing out from his peers. He is extremely attached to me and gets v distressed in social situations if I go out of eye shot. Maybe that's part of the social anxiety?

I guess, I had fixed ideas about ASD. I didn't think kids on the spectrum could be so much fun/ so cheeky and social ( but more to adults it seems) so cuddly. I had zoned into these strengths and thought, he doesn't meet the criteria! He doesn't have repetition/ rigidity. BUT, in social situations, he is demonstrating rigidity. He wants to avoid and demands to go home etc. will take me by the hand and "this way" towards the door/ exit and get very distressed if we don't leave. I try to stall if it's too soon as we can't be leaving a group after 10mins! He can cope with that for a while, depending on the nature of the social event.

So, is the ASD going to start to become more obvious now as he gets older? I'm so down and worried about what's ahead. We've a new baby due soon. was hoping to not have to worry about my son but I do... Sorry, having a bad day.

Jen44

In a similar situation to yourself with our three year old. Any word on appointments yet? I rang the AON officer to be told at the moment it's 10 months for Physio and over a year for clinical psychology!! Very upsetting! We have decided to go privately as we feel we can't sit on our hands! She has also been referred to the early intervention team so have just filled out forms for that and sent them off

All I can say is some of the most amazing, fun, kind and adorable children I work with and know have autism. If parents knew the joy down the line as well as the uncertainties and hard days they would be much less sad at diagnosis or possibility of diagnosis. I wish you all the best on your journey.

73trix

Jen44 wrote: »

In a similar situation to yourself with our three year old. Any word on appointments yet? I rang the AON officer to be told at the moment it's 10 months for Physio and over a year for clinical psychology!! Very upsetting! We have decided to go privately as we feel we can't sit on our hands! She has also been referred to the early intervention team so have just filled out forms for that and sent them off

Sorry to hear you are also going on this journey. We were lucky that we got into system early- I had concerns about development from early on. We have since been immersed in AON process- SLT, OT, PT assessments done and have our ADOS assessments scheduled for November so we should have the diagnosis/ not by December.

Best luck to you and your little one. Will keep thread updated.

73trix

[Deleted User] wrote: »

All I can say is some of the most amazing, fun, kind and adorable children I work with and know have autism. If parents knew the joy down the line as well as the uncertainties and hard days they would be much less sad at diagnosis or possibility of diagnosis. I wish you all the best on your journey.

Thanks for your encouraging reply.
ASD is such a scary thing. It's good to hear that kids can do well. It's easy to get focused on the stereotype of the detached/ distant kid with challenging behaviours. I've met many kids with more severe ASD and many challenges.

Ela1702

73trix- Our son has just turned 7 and exactly one month before his birthday has been given the ASD diagnosis. We applied for the AON in Oct 2016, by May 2017 the school was pressuring us to make contact withe the AON officer as 'if you don't stay on top of them his application will go to the bottom of the pile'- their words exactly. I don't know if it was a coincidence, but 5 days after we called the AON officer we received the referral to a great private team that did all the assessments and gave the diagnosis (although we were going publicly, I wasn't aware that since there is not enough resources alot of the assessments get outsourced). If I must say they were great, and we still have to make contact with them, but they are very professional and accommodating. We went firstly for the cognitive and OT assessments, but these showed no concerns so by the end of July we were told we will have to do the ADOS- we have considered the possibility of ASD before, but the reasons that you outlined were exactly the reasons why we left it so late. Your son sounds SO much like our son in terms of being so much fun, always playful, great interactions with us at home, extremely affectionate and not to mention that he had no language delay and his speech has always been absolutely great. Eye contact was ok with us, as long as he was comfortable with the person, but with teachers or other strangers it wouldn't be great. We knew he had sensory difficulties, always fiddling with things and chewing on everything he could get his hands on. And the moment we would leave the house with him things would get difficult. Meltdowns and overreactions we put down to him being stubborn and strong minded. What can I say, for about 3 years we tried to find excuses in order to tell ourselves that we shouldn't be concerned. The school really pushed us, in a constructive way, although he had a very bad start in junior infants, his teacher was not the kindest, most approachable person so our whole life started turning upside down when he started school. But when we noticed more and more how much he stands out amongst his peers we knew it was time to accept that we need to start on this journey and help him if he needs help. These have been the most emotional 2.5 years of my life, as you say yourself, it's such an emotional journey. I wish you strength for when you get the result from the ADOS assessment. And if you do get the ASD diagnosis know that it will be tough. At least you are aware that the extreme cases out there do not reflect necessarily the way your son will end up- but as mums, what we do is worry, so you will worry regardless. I am going through an extremely hard time at the moment so probably not best for me to give advice. :-( Waiting for counselling myself now... I spoke to other ASD mums who seem so strong and got it all together, just makes me feel like there is something wrong with me that I cannot deal with this, I can't seem to take it just as it is and find a balance in my life. I won't get into it more as it might not be ASD with your son, so most of what I'm going through might not be applicable- but please let me know if it turns out to be ASD, we can worry and feel sorry for ourselves and our gorgeous sons together.

yellow hen

We went through the AON process about 18months ago just after our son turned 3. He has major S&L delay, huge balance and coordination difficulties. He has no sensory difficulties. At the time he wouldn’t have had amazing imaginative play or social interaction. Since his speech has developed, that’s been great though although he has serious concentration/attention difficulties. The AON process had no diagnosis only to monitor and offer OT and SLT immediately. We’ve gone private routes for both of these as the public offerings have been dismal. At the start I was heartbroken for him as he was so behind his peers. He still is well behind them now but he is developing and at 4.5, I would put him at more around 3.5. He’s a great little lad and I’m in hurry to label him with anything. For as long as we can access services to meet his needs, I don’t think putting a name on his deficits/difficulties is helpful. I’ve talked to the AON team and he will be assessed by a Psychologist early next year so we can ensure that he can access any supports he might need in primary school. The private OT has also said that they will visit his primary school to ensure he is prepared for any possible obstacles there. I think about him and his future every single day. Some days I cry. But he is getting there…. I like to think of him as my late bloomer. I read so many tragic stories of small children with cancer and leukemia and I think, I really have nothing to feel bad about here. There’s no point in saying don’t worry etc because you will but try to just take it one step at a time and play with him all the time. Learning and developing through play is the secret.

Jen44

Your son sounds very like our daughter! She is the happiest little girl you could meet and the amount of people who have said to us over the years wow she's very advanced coz of her speech well you couldn't count them! So needless to say we are finding this situation so tough! Like you said it was only when we saw her with her peers that we began to see what her Montessori teachers were seeing! It stood out to me at the Christmas carol service all the other 2 1/2 year olds stood on their little square even if they didn't sing they stood there! Our little one was in her own world she kept coming down into the audience chatting to the other parents etc! It was very stressful I cried in the car on the way home and I came downstairs at 4 am and cried my eyes out! I knew then it was something! So nervous for the parent interview tomorrow the more we talk about her the more real it all seems to us

yellow hen

My son didnt even begin to speak until he was 3 so it was more apparent to us. My frame of mind is now, that we all learn differently and so long as they're happy, confident and developing, there really isn't a problem. I think most of our concerns are fears are when we compare and contrast. At home, we're as happy as larry. So the problem is more with us, his parents and not him at all. Don't stress, it'll be fine. Be open and honest. If you need anything or anything I can help with, just pm me.

73trix

73trix wrote: »

Thanks for your encouraging reply.
ASD is such a scary thing. It's good to hear that kids can do well. It's easy to get focused on the stereotype of the detached/ distant kid with challenging behaviours. I've met many kids with more severe ASD and many challenges.

Oh they can do so well and are such loving caring little people who I am so privileged to work with every day. If I could have a child as amazing as the children with asd I teach I would be delighted. It can be challenging and frustrating to see their difficulties but I know from working with them that if I had a child with autism it would not scare me in the slightest as I know what amazing times I have had with my current pupils.

Jen44

Had our parent interview on Friday! The psychologist has recommended OT. She said it sounds like there is a sensory problem as the constant movement is quite indicitive of it. We got her a mini trampoline on sat but so far she's not too interested in it! We had recently signed her up for drama classes but I think we are going to have to knock it on the head! This sat was a disaster she kept trying to run out of the class and then when my husband went in with her she kept making noises and was licking his face, very upsetting as we know if she was able she would really enjoy it as she loves singing and dancing!

yellow hen

Jen44 wrote: »

Had our parent interview on Friday! The psychologist has recommended OT. She said it sounds like there is a sensory problem as the constant movement is quite indicitive of it. We got her a mini trampoline on sat but so far she's not too interested in it! We had recently signed her up for drama classes but I think we are going to have to knock it on the head! This sat was a disaster she kept trying to run out of the class and then when my husband went in with her she kept making noises and was licking his face, very upsetting as we know if she was able she would really enjoy it as she loves singing and dancing!

Don't worry, you will get these things under control. Not every therapy recommendation will suit your daughter so you need to find what suits. I'll give you a few ideas (from my experience only, I'm by no means an expert here).

Rough play to counteract the constant sensory seeking/running etc - we have trampolines, a huge beanbag, the Ikea tunnel. We use these when we're playing by 'crushing him with beanbag, making him climb through the tunnel over mountains occasions etc. Everyday things like opening heavy doors, carrying shopping, emptying washing machine will all help and are easier to build into your every day life.

Sensory buckets of rice are good.. I used to hide toys or sweets in them. Playing with shaving foam or finger painting is good too. Play dough or putty is good for working the hands too.

Not sure how to treat the licking but if you Google, you'll find ideas. Your OT will help you build a sensory diet which will essentially give your child all the tools to function like a typical child. It's not all bad at all... my son is 4.5 now and he's changed beyond belief in 2 years. He wasn't that bad but little cjsnfes at home have helped so much. He also swims and horserides daily which is supposedly hugely beneficial. Have you found an OT yet?

Jen44

yellow hen wrote: »

Don't worry, you will get these things under control. Not every therapy recommendation will suit your daughter so you need to find what suits. I'll give you a few ideas (from my experience only, I'm by no means an expert here).

Rough play to counteract the constant sensory seeking/running etc - we have trampolines, a huge beanbag, the Ikea tunnel. We use these when we're playing by 'crushing him with beanbag, making him climb through the tunnel over mountains occasions etc. Everyday things like opening heavy doors, carrying shopping, emptying washing machine will all help and are easier to build into your every day life.

Sensory buckets of rice are good.. I used to hide toys or sweets in them. Playing with shaving foam or finger painting is good too. Play dough or putty is good for working the hands too.

Not sure how to treat the licking but if you Google, you'll find ideas. Your OT will help you build a sensory diet which will essentially give your child all the tools to function like a typical child. It's not all bad at all... my son is 4.5 now and he's changed beyond belief in 2 years. He wasn't that bad but little cjsnfes at home have helped so much. He also swims and horserides daily which is supposedly hugely beneficial. Have you found an OT yet?

That sounds great will try to get her doing a few bits at home! I don't know where the licking came from she never did that before! I think this is what I'm finding stressful the last two weeks or so she is starting to do some strange things! We are booked into the OT in the same place in Sandyford, the adult and child therapy centre! A friend recommended The out of sync child it's a book about SPD. Her Montessori teacher is so good and has sourced the book for me and ordered it. She's amazing I have to say, only for her we would never have know what to do or where to start

73trix

So, nearly 2 years after the first red flags, my little boy has been diagnosed with ASD. Even tho it's not really a surprise, we kept hope alive that it would not turn out so (given other factors such as a history of seizures when a younger child) and it's so true what people say, the reality of hearing the words for real are gutting.

Have been in a heap for the past couple of weeks but welcome support of others on this journey. There really isn't anyone who understands what my partner and I are going thro.

The jist is that LO has lots of strengths, there's no concern about his IQ and should "do well" so clinging onto that but I think the words " he may have an interest in making friends...down the road..." has really hit me to the core.

He's the happiest little chappie at home but struggles in social settings. Attends playschool. Loves going but I'm learning as we go along that he does his own thing and does not really interact with his peers which makes me sad.

Clara B

Reading all these posts is lovely. So many fantastic parents who are working so hard for their kids.

In answer to your question from my very limited experience with my child yes I think its a constantly developing and changing situation with ASD. There are traits and issues my son had at 3 that have all but disappeared,but have been replaced by new ones. At 3 as soon as we walked in our front door he had to be stripped down to nappy or he would go mad. Now he wears clothes with no problem. His speech was very delayed and consequently because of his inability to communicate he would have epic tantrums. These have calmed down as his speech has developed. New traits have emerged in the last few weeks, Walking on tip toe, hand gestures being repeated, but he has also started saying "I love you mammy" and allowing our daughter to hug him without invitation-so there is a good side!
I see with him that as he develops new things appear-I think it will always be that way. Just hopefully we can always deal with them!