Referred for assessment - possible ASD

[amelia26]

My 3.5yo son has been referred to assess for possible asd and I'm feeling pretty devastated about the prospect.

J was a pretty normal baby and hit milestones well. He was quite sensitive to noise etc but no other real concerns. At age 2 he got very into numbers and could count to 100 but I still didn't have any particular concerns.

By 3 it was becoming clear that he was starting to drop behind his peers in speech - he has a good vocab but poor conversation. I went to SALT but they said to see how he is one he starts preschool. At 3.5yo my concerns are now greater - particularly that he's doing a lot of echoing. He's much more likely to repeat the question than answer it.

I spoke to his preschool and they have the same concerns. He's not socialising at all there, no eye contact, very little speech (only when he's asked a direct question), they said he speaks in a monotone, flaps his hands a lot and does circuits round the room. He only ever pays by himself.


None of it surprised me really but I feel so sad thinking about him paying on his own and feeling too overwhelmed to really speak at all. I know nothing is going to happen for a long time regarding the assessment but I can't stand this limbo. The preschool seemed pretty certain he might have an asd. The health visitor seemed to think it could go either way and it could be something he catches up on.
I just feel so sad for him. I want to just keep him at home to protect him but I know the preschool is good for him to practice socialising.

 

[alibaba24]

Totally understand the feelings you are having iv been there with my daughter. All I can say is don't let the feelings consume you and it does get more comfortable I wouldn't say easier but the wait I mean. Were still kinda in limbo 2 years later but iv learnt stressing doesn't change anything .xx also with the playing alone it made me sad too but that's obviously what makes them happier more comfortable so in a way even tho we are sad it doesn't mean they are x

 

[Reid]

We have just been through the process and got a diagnosis of asd last month my son was referred in January so about 8 months from referral till diagnosis. The important thing is what you're doing now will only benefit you're child. I'm not much of a stresser myself and like alibaba24 said try not to let in consume you. Last February I moved my son out of his nursery and into a specialist nursery for asd definitely look into this for your area it was the best thing I done for him he's come on really well there and he really loves it xx

 

[Domimom]

I went through this 8 years ago. My son was diagnosed at 27 months. I was completely devastated. He was a normal baby, smiled at 6 weeks, laughed at 3 months, was happy and social but was behind in speech by 18 months, I thought he just needed speech therapy and they diagnosed him. He has since been diagnosed with Aspergers. I remember thinking "would he ever talk?" "would he ever have friends?" I went through all emotions, sadness, anger, grief. He is now 10 years old and has made such huge progress. He still gets speech and OT but otherwise is doing great. They told us he would have trouble reading and writing, and he reads and comprehends at high school level and he is in 5th grade. I do homeschool him because he was not getting services in public school. He doesn't need to be around kids all the time, he prefers to play on the computer but he's happy! And that is all that matters to me.

 

[Thurinius]

My 3.5yo son has been referred to assess for possible asd and I'm feeling pretty devastated about the prospect.

J was a pretty normal baby and hit milestones well. He was quite sensitive to noise etc but no other real concerns. At age 2 he got very into numbers and could count to 100 but I still didn't have any particular concerns.

By 3 it was becoming clear that he was starting to drop behind his peers in speech - he has a good vocab but poor conversation. I went to SALT but they said to see how he is one he starts preschool. At 3.5yo my concerns are now greater - particularly that he's doing a lot of echoing. He's much more likely to repeat the question than answer it.

I spoke to his preschool and they have the same concerns. He's not socialising at all there, no eye contact, very little speech (only when he's asked a direct question), they said he speaks in a monotone, flaps his hands a lot and does circuits round the room. He only ever pays by himself.


None of it surprised me really but I feel so sad thinking about him paying on his own and feeling too overwhelmed to really speak at all. I know nothing is going to happen for a long time regarding the assessment but I can't stand this limbo. The preschool seemed pretty certain he might have an asd. The health visitor seemed to think it could go either way and it could be something he catches up on.
I just feel so sad for him. I want to just keep him at home to protect him but I know the preschool is good for him to practice socialising.

This sounds very much like my son at the same age.
He will be five next month and has come on so much. He even has friends which I didn't even contemplate when we had the diagnosis of asd. I just assumed that would never happen for him.

But it has. He has a best friend and several other friends even though he still doesn't talk much outside the home.
He loved nursery and I think it was very good for his socialisation skills for starting school.

 

[amelia26]

Thanks for the responses. And it's great to hear your lo is making friends. That's my biggest concern really as I don't think he's particularly behind in other areas. He has good understanding, dresses himself, feeds himself etc. Plays with all sorts including imaginative play. It's only really the social communication side - oh and his pencil grip.

I'm struggling a bit about what to do now and how best to help him, whether it's an asd or not. He's got salt sessions coming up but hv said she wouldn't want to refer for other services til we know more.
I keep doubting myself about my choice of preschool but it has great ratios and the woman working with him has experience of asd and a son on the spectrum. And he's very slow to warm up to people and places so I don't really want to move him to start all over again (he was crying a lot to start with because he wanted me to stay. We've just got past that).

Hv said to ask preschool more about how they plan to support him. I'm also going to suggest they give a regular little job to do as he lives being helpful and I think that would help him feel part of things there.
He starts school in Sept and I'm looking at schools atm and finding it a bit upsetting the thought of sending him. But I really have no idea what progress he might have made by then.

 

[Thurinius]

I was originally going to put my son in nursery for 3 afternoons a week. But the early years team suggested the full five afternoons would be better for him as it gave him more opportunity to settle into his surroundings.
and more chance to observe hus peers and maybe copy their behaviour.

I think the extra time served him well. He's settled in great to reception but I'm quite worried about him starting year one because that's really the start of proper lessons where he will be expected to sit still and participate

 

[Reid]

I was originally going to put my son in nursery for 3 afternoons a week. But the early years team suggested the full five afternoons would be better for him as it gave him more opportunity to settle into his surroundings.
and more chance to observe hus peers and maybe copy their behaviour.

I think the extra time served him well. He's settled in great to reception but I'm quite worried about him starting year one because that's really the start of proper lessons where he will be expected to sit still and participate

This is like us to my son started in mainstream nursery 3 sessions a week 2 hours but the nursery was terrible kept phoning me to get hi early the I was I would have to stay with him all the time to give him the 1 to 1 support he needed that's when I phoned the csso to tell her I was removing him from that nursery. She wasn't impressed at all because if the nursery had followed the correct procedures the csso could have got the extra support in for him.
We moved him into a specialist nursery who deal with speech delayed and disorders asd Ect it's made a huge difference in my son's learning he's made wee friends at nursery to his language has improved and he's happy there
4 days a week he's there full days they've only ever phoned me to me if he's fell or something never been sent home it really has been the best thing I done for him and it's amazing what can be achieved when the right support is in place xx

 

[Thurinius]

Totally agree with the above. My son is in main stream schooling but his teachers are so determined to make his time there as easy as possible for him.
they take account of his needs and take advise from.the communications disorder team for the county as to how to support him.

 

[kealz]

Similar situation here and I totally empathise with what you say. My son is 3yrs old and begins assessments tomorrow, so anxious to hear what they have to say in the coming weeks. Thank you for starting this thread as reading these replies is giving me so hope. I too feel like I can't see my child making friends or speaking more but hearing your positive comments eases my worries, that it is all possible. I am going to push for my ds to be considered for a specialist nursery.

 

[amelia26]

Thinking of you for tomorrow. . Let us know how you get on.

I don't think he would be eligible for anything like a specialist nursery at present.
He goes to preschool for 15 hours a week. 6 hours on Mondays and Tuesdays and 3 hours on Wednesday. He only started in September - just a week after his new baby sister came home from the hospital. He had a couple of good weeks, then a very tearful week. Then a week off with croup, then another tearful week, theb a good week then half term holiday and then last week. So he's still very much in the process of settling (and he's slow to warm to new people and places).
I mentioned the good ratios - they seem to have enough staff to do one on one with him whenhe nnees it and step back when he doesn't. My hv said at the moment we should try and focus on him feeling safe and confident there and I know from past experience we can't rush him too much with that.

 

[Reid]

Kealz
Ano it's easy to say but try not worry whatever the outcome is you are now working towards helping you're son and understanding him better. Do let us no how you get on.

Amelia26
What makes you think you're son wouldn't be eligible for specialist nursery?
If it's something you would like to look into talk with the current nursery or you're HV.
We had the educational psychologist come in and observe my son in nursery and she suggested that his current specialist nursery would be much better for him.
His old nursery was open planned so it was overwhelming for him and hard to get his attention with so much going on round him plus the staffing ratio wasn't as good as his current nursery think it was 1 to 6 or 8
His new nursery is separated rooms including hin there's 6 kids in the room and 3 members of staff. They use alot of different things to help encourage speech pecs some signing and the hannan approach. They also have salt in the nursery which he sees weekly.

The hannan approach which I mentioned above is well worth looking into. I done the parents course (the nursery organised that) I found it really helpful xx

 

[kealz]

Thanks ladies

Ds went this morning for first time, not much to report as they just eased the boys in today (my son + 2 other boys being assessed together). The staff reported that he's been fine in himself and sat at the table to eat with the others, only issue was nappy change time but they had just put the lunches out and think he thought he wasn't getting his! He's come back very tired with paint on his clothes and play dough on his shoes so I think he's had a good time. The pyschologist is going in to observe tomorrow so should have more development feedback then. I feel a bit better knowing that ds is at least enjoying going. x

Reid - I've seen that Hannan approach mentioned somewhere else, what's the idea with that support..?

Edited for spelling mistakes!

 

[Reid]

Thanks ladies

Ds went this morning for first time, not much to report as they just eased the boys in today (my son + 2 other boys being assessed together). The staff reported that he's been fine in himself and sat at the table to eat with the others, only issue was nappy change time but they had just put the lunches out and think he thought he wasn't getting his! He's come back very tired with paint on his clothes and play dough on his shoes so I think he's had a good time. The pyschologist is going in to observe tomorrow so should have more development feedback then. I feel a bit better knowing that ds is at least enjoying going. x

Reid - I've seen that Hannan approach mentioned somewhere else, what's the idea with that support..?

Edited for spelling mistakes!

I found it really useful and it's really simple this is there Web site where you can get more info
https://www.hanen.org/Programs/For-Parents/It-Takes-Two-to-Talk.aspx

 

[Reid]

There's also videos on you tube using hanen xx

 

[kealz]

Thank you, I will take a look. x

 

[amelia26]

There's only one specialist preschool in the area which is for children with severe and complex needs - which I'm confident J doesn't have. I know there's high demand for it too.
Other services are people coming out to support in a mainstream setting or at home.

I had another chat with pre school yesterday and I think he's actually doing better there than I thought. The ratios there are often 1 to 4 or 1 to 3. I've even seen it 1 to 2 one session. They're giving me more detailed info now in his contact book and it's clear he's getting a lot of support from his keyworker and assistant manager (she has more sen/asd experience so she's working with him a lot). He was 'happy helper' there yesterday and seemed really happy about it.

I'm glad the firat day of assessment went well and your lo enjoyed it. What does it entail if you mind me asking?

 

[kealz]

Your pre school sounds like they are supporting your ds really well.

In our area - West Midlands, UK - assessment is being done at the local hospital. They have a purposely created nursery environment there where they have up to 4 children at a time. They attend 4 mornings a week, for 3 weeks. The children are looked after by specialist nursery nurses who make observations of different areas of development to inform the psychologist, SALT, paed, OT, physio etc. These professionals will also come and make their own observations directly and/or give children some targeted support. Meetings are held with parents at different points to discuss what has been observed etc. Parents receive a daily diary of what their child has been doing during each session and parents can stay and watch at any point through the one-way mirror. At the end, there is a bigger meeting with parents, psychologist and paediatrician (and any other services parents want involved) to discuss possible diagnosis and future support. x

 

[amelia26]

That sounds like a good process kealz.

I've been looking at schools this week as my son starts in September. It's difficult chposing the right place for him when we know so little.
But I went to our closest school today and was very impressed. The reception class space is big but divided so not overwhelming. They have their own garden with access all day. My son (who hates new places) loved it and just joined in with the school kids!
It's a mainstream school which also has a specialist SEN unit for those with complex/severe needs and really good provision and support for children with SEN in the mainstream classes. So its a mainstream school but the support would be right there for him if he needs it. I think it might be a good choice for him.

Out of interest - those of you with preschool age children - do you do much 'work' with them at home? My boy loves numbers. He's learning additionand fractions and how to tell the time. II'm right to go with it aren't I? He's been doing worksheets of maths recently and he just loves it. I'm trying to encourage him to write the numbers too as mark-making isn't his strength, but he just keeps asking for sums, bless him. I was thinking of starting on subtraction next week. He's 3.5yo.

 

[kealz]

My ds loves numbers too! Yes, absolutely encourage it! My ds finds happiness in numbers, he knows it's something he's good at and will sometimes count to himself when he's upset, as a comfort. That's fab that that your ds is adding and subtracting and he's enjoying it so much.

Just a note... If your ds is ready to move on from single digit + and - then it might be worth asking your potential school for a copy of their maths policy if they have one. This will tell you the methods that they use to teach children maths skills. Then when your ds starts school, they will just naturally build upon what you've started at home.