I'm so sick of this is he ASD or isn't he. Just need to rant so very very long.

[Ellie4]

I don't want to talk to anyone in RL but need to rant. I'm not looking for responses but just want to get things off my chest My son is now 2.8
Our story started a month before my son's 2nd b'day. Before this we wern't aware of any issues except a delay in language which we put down to being a boy and being a two language family. Then I read an article about autism and lots of things seemed to fit such as poor eye contact, happy to play by himself, toewalking, lack of response to name and repeating speech.
We looked up on the internet ( I know, I know) and we convinced ourselves our son was autistic. Getting a dx or not has been difficult so far. We don't live in the UK so things are more complicated. First we went to a psychologist (not specialized) who said no he doesn't so we relaxed a bit. Then we took him for a brief assessment at a centre for ASD. This was done to see if he would be suitable for the centre. Even if he was though they wouldn't have been able to take him as he is not the correct nationality. Their verdict after approx was probably not ASD but he does have little eye contact.
We were still worried so found a neuro-developmental paed . Her initial impression was he may be HFA or ADHD or SLI. We decided to do full assess as she said she could give a definite answer. After numerous 4 hour round trips not to mention £ her diagnosis was he may be HFA, ADHD, or SLI or he may just grow out of it . So that was time and money well spent - NOT .
We decided to follow her treatment plan but as time went on we were not convinced how beneficial it was - she wanted to teach PECS to him but as he had a vocab of approx 150 words we thought what was the point in that. She also taught about Theraplay and manding. We continued till my husband was hospitalised. During this time my parents were staying with us.
Just after they had gone at 2.4 yrs he started putting 2 and more words together. Now 3 and a half months later he freqently uses sentences of 5 or more words and can sometimes put 2 short sentences together. However the speech doesn't quite sound true. Initially there were pauses between words but these have become shorter although I still don't think it sounds "right". We have now got to see a SALT and although she agrees the pauses are not normal she insists he's not ASD.
We have tried to gt into the public system and did see a paed neuro who said no he doesn't think he is ASD. Once again our hopes were lifted then as the weeks pass we start to worry again.
So many things he does people dismiss such as the lack of eye contact the paed said he just uses it when he needs to. He does have eye contact and when he does it can be very good its just he doesn't use it all the time iykwim and will frequently ask for things without looking at the person. In books lots of the things he does are listed as being phases some toddlers go through such as toe walking, not listening, wandering off while out.
He also does not show affection - he has never given me a hug or said he loves me ( he did to his teacher though little monkey). However he will give hugs and kisses if asked.
Next week we are seeing another psychologist who specializes in ASD for an initial assess and then will do the ADOS and ADIR so hopefully we will have more answers. It is so hard analysing everything he does and wondering what does this mean. Eg we went to play at a friends house yesterday. Teh boys started off in the paddling pool and were having fun together , laughing and looking at each other. Then another boy came who speaks far more than my son and my son got left out and did his own thing. I am wondering is this because he is ASD and just likes to be own his own or is it just easier for him to play like this as he has less speech and can't keep up with the others. Every day is spent with so much analyzing.
His nursery teacher thinks he is doing fine and says not to worry but we only said we were worried about his lack of speech. From talking to her he is doing fine there except for the fact that he often runs out the classroom and goes to check out the other classrooms.
In my heart I guess there is something up as otherwise I wouldn't still be wondering.
I'm pretty sure no one read this far but if you did thanks for listening. I just needed to unload and as said before I don't want to talk about it in RL

I absolutely understand your is he, isnt he dilema - DS5 is 2.11y and we've had this same problem since he was 16mths. He had regression, hes non-verbal, has GDD of 18mths+ lots of other bits. BUT hes quite sociable, his eyecontact is quite good now, hes very hugable... so i totally sympathise.

I've been through similar (my DS's speech was probably quite a bit worse than your DS's at that age). It's extremely frustrating. There seems to be such a fine line between HFA/SLI and concentration problems. And I identify with the overanalysing social interactions - that you don't feel your kid has an off day if they are withdrawn, but stress about ASD/social skills.

By saying the language doesn't sound right - do you mean that the intonation is odd, or do you mean that you feel the sentences are memorised (so he wouldn't be able to put together a slightly different sentence himself).

Hello Ellie4! We're in a similar dilemma with DS (3), even though his speech is more delayed than your DS's (2 sentences together!! I'm impressed ). We are up for assessment in 2 weeks, and my greatest fear is that they'll say it could be this, it could be that, we can't really tell at the moment. So I sympathize, and also hear you very well about things being different in other countries - I am not from the UK, and the attitude towards ASD etc. in my home country is very different. Basically, if it's not classical autism then it's something they'll grow out of. I hope next week's psychologist tells you something more concrete. There are a lot of things that can be done today about ASD, HFA and all the rest of it, and I've found MN invaluable as a source of information and an outlet for frustration.
I don't have any real wisdom here - I can just tell you, as I keep telling myself every day, that it is very important to try and stay calm. We need to be not just strong, but happy, so our DC can learn that from us, along with all the other things. Keep posting - I'm a novice, but a lot of the mums here have a lot of experience and wisdom to share

Oh Ellie4 - I am so sorry that you are going through this. I completely understand your frustrations - I could have written much of your post myself (different countries, navigating the system, is he/isn't he etc) and am about to write a full on rant style post myself!

It would be nice if we could just do a blood test and get a clear answer wouldn't it. Have you thought about getting a private diagnosis done in the UK? I have no idea how to go about that but I'm sure the other more knowledgeable types here can point you in the right direction.

I would say though, that don't channel all of your energies into getting a diagnosis. Channel them into therapies, even before you get a diagnosis. If it turns out your son doesn't need them in the long run, no harm done. My own experience has been that getting a diagnosis is only the first hurdle, getting some effing intervention after the diagnosis is another battle altogether. Look into the public system right now and see what he is/would be entitled to (apparently our public system (sweden) says that intervention should preferably be started as soon as a condition is suspected, not having to wait for the diagnosis - ha!). Look into private therapies you might be able to employ, and those you can do yourself at home (Floortime? They are running an online course at the moment which they only do once a year, but it's pretty heavy going), and start using them now. You know your son better than any of the professionals who will see him and you know what his strengths are and what areas are weaker and need to be worked on.

Chin up - I know it's hard. When I have really really bad days, when I've all but given up the fight (today is one of them) I picture my son at the top of mountain saying 'thank you'. Maybe in another life....

i would take any therapies going that is offered even if you dont feel he needs them

my ds was dx with HFA at 3 and took us along time to get extra help for him he has atypical speech and this was known from 2 years old SALT came when he was nearly 3 half so we had huge wait

your ds language sounds great not sure what you mean by doesnt sound right my ds replaces sounds so bob is gog mummy is nunny daddy is gaggy but gradually were getting there

my ds plus nt children i know if someone is more forthcoming they tend to back off

your ds sounds like his coming along great for his age with few things that could or couldnt be ASD related eye contact at that age can be very shyed away anyway not all children are huggy children

i think you need to stop panicking and focus on the progress he has made and work with it and take any advise and offers from people even if you feel he doesnt need it no therapies can harm a child they can only benefit

when children start forming words together they tend to pause alot to think about what there saying etc this stops when confidence of speech comes along his still young and my ds didnt start sentences till 3 half so your ds seems to be doing so well his speech is at same level as my ds and my ds is 4 nearly

does he have routines, does he have any ASD traits such as lining things up does he need routine to prepare him for going places etc

my pead told me that all children at toddler age display some ASD traits that they grow out of but some traits would be more severe to determine if it is ASD related

so unfortunately if not displaying enough then it is a waiting game to see if traits stay or they worsen or by certain age the milestones haven't been reached

We went through something similar - we knew ds2 had S&L difficulties, first raised at 18months - he was delayed in other areas as well - so we had the benefit of a play therapist for a while and another lady who came in to help with communication.

Speech continued to be significantly delayed and eventually we were lucky to gain a place at ICAN Nursery when DS2 was 3. He attended this and staff raised concerns about routines, etc, etc so we agreed to proceed with an assessment.

We watched his every move - it was horrendous; is he?; isn't he? - oh he wouldn't do that if he was asd, or yes, that's definitely asd - it was totally stressful and I cried buckets.

Then we finally had an assessment in Dec 05 and, although, there were definitely S&L difficultes he wasn't diagnosed with an asd.

So that was fine for a few months, his school (now in Communication Unit attached to mainstream school) continued to raise concerns and eventually after months of the is, he isn't he again, we got a dx in Feb 07 of HFA.

The waiting was dreadful, but the dx was easier to make because he was a bit older and his difficulties were obviously not due to S&L by then.

Check out what resources are available to you - nursery, perhaps specialist if necessary, schools, etc.

You may be lucky to get something definitive from the psycholgist who specialises in asd or, if you are like us, it might be a case of watch and wait - hard as it was we still had all the services we needed on board which is a big comfort tbh.

DS2 is now 8, his speech has improved so much - although we are still working on it - he is reluctant! and there are only 7 other pupils in his class and he is very happy at school.

Thanks for your replies and for bothering to read it all.

When I say the speech doesn't sound right I mean it almost sounds like he is saying the words individually eg Can. Mummy. Give. Water. Please. although this is much less pronounced now. I do think that he has to think carefully about what to say as sometimes it takes him a few times to get started on a sentence eg can mummy. can mummy. can mummy give water please

He doesn't need to have routine and only occasionally does he line things up. When he does this he normally says he is making a train.

The psych does ABA so we will see what her recommendations are but no matter what we want to do something as we are aware time is going by.

We are seeing her in a weeks time so have to wait till then.

Oh I totally identify with this. We've been stuck in it since ds1 turned 2, he'll be 4 this August and we're not much further on.

DS' expressive and receptive language is very behind and he struggles to spontaneously form sentences, there's a bit of echolalia going on. However, his typically ASD symptoms (no need for routine whatsoever, he's very affectionate and sociable) are so mild, it could be a language disorder, it could be very high functioning autism or it could be something he grows out of. The experts here don't know, so we don't have a hope!

I'm always watching him for ASD behaviour, it is incredibly stressful. Tiredness seems to exacerbate it all so much.

I guess my 9 month wait is nothing compared to what you have all been through. We have found a psychologist who will do some ABA with him and see how things go. We are going to start with 10 hrs a week for the first month then reassess.
I've actually just bottled out of a dx asses using ADOS. Trying to work up the courage to go for it but better be quick as just put him on GF diet and ABA will start towards the end of the month.
Thing is here, the will be no extra help whether we get a dx or not.
Thanks

ds has some traits but there sitting on the fence as like tclanger they thinK its linked into him having sever sli