DS is 4 and the bullying has already started :-(

[skidd]

DS1 is under assessment for possible HFA/AS. He has been at pre-school for over a year now and has never settled in very well and has no friends. He also loves princesses and all things girlie, is extremely shy, and very passive.

So yesterday he told me (still amazed and delighted he actually told me) that some boys had been calling him names. I knew this might happen but they are all still so young - I'm shocked it has started so soon. I can't bear the thought that this may continue and get worse over the next 12 years and my beautiful quirky little boy is going to suffer at the hands of these little sh*ts just because he is a bit different.

Told the teacher this morning who was lovely and is going to 'sort it'. But is this just the beginning of years of the same? How do I deal with it? What can I do to stop it? I have even been fantasising about giving up my job and homeschooling him but I think I would be rubbish at it and is taking him out of the education system really the answer? From what I have read, even if he gets a dx, there's no way he will get into a special school because he is very HF. Any advice from more experienced MNetters much appreciated.

ooh yes my DS loves colouring in his finger nails!

Oh it's so hard to judge, isn't it? I KNOW the paed has me down as an pverprotective neurotic mother, and I really dont want to be seeing problems when actually his behaviour is maybe a bit quirky but not concerning. OTOH of course I don't want to miss a red flag and delay diagnosis and (hopefully) support. Your example of the workbook is the kind of thing I can imagine DS doing as well.

Can I ask you if your DS does any of the following (my DS does all of them)?

• speaks with expression (i.e. not in monotone)
• has an expressive face - smiles, shows surprise etc
• seeks your attention to tell/show you things
• spontaneously shows you affection
• spontaneously shows others (siblings/grandparents/friends) affection
• sometimes take changes in plan completely in his stride (other times not at all)

I know it's not as simple as, 'he does this so he can't be autistic' but sometimes I think he has too many non-ASD type behaviours to qualify for a diagnosis, which tbh really depresses me because if he doesn't get a dx, then what is it that causes his difficulties and how on earth are we going to help him

Forgot to say the SENCO and EP at his school are well-known for their incompetence. The SENCO didn't know a who a friend of my DD's was after 3 years in the school and she is profoundly deaf . I wouldn't have too much faith in their judgement tbh

Yes my ds speaks with expression, not in monotone, but his expressive language does become very monologue, he produces too much around his favourite subjects, in 'free' speech ie social situations. More formal questions ie someone asking him about something, he can answer , but he assumes the listener has more knowledge than they do ie doesnt realise they dont know everything about him. So you can have a conversation with him, but he can be quite random or 'boring' and go on and on! His expressive skills when tested where on the 75th centile, but he still has difficulties.

He has an expressive face, he smiles etc. Although he doesnt always show the correct expression, he can smile when anxious for example.

Yep he seeks my attention to show me things and is always telling me things, but as above for expressive language.

Very affectionate, maybe overly so, always telling me he loves me, he used to hug strangers too.

Ds always appears to take change in his stride, not always because he actually does, but because he is also overly passive and wouldnt make a fuss. He would do whatever was asked of him, regardless of how he felt about it. But this causes him anxiety which he directs inwards.

Dug out ds's private SALT assessment for expressive language, it explains it better than me. All formal assessment scores are within the average range. BUT

whilst he speaks at length, using complex sentence structures and can describe pictures in detail, he struggled to grasp the underlying meaning of a situation.

Ds was aided by visual sequence pictures, but his narrative did not describe the ideas of the story. He spoke at length about irrelevant details and did not get the gist of the storyline. He was not able to understand the relationships of the characters or to understand the emotions the characters were feeling.

He did not demonstrate theory of mind ie to see a situation from another perspective. Ds might give the impression of understanding as he is keen to comply by using visual clues, but as was observed in class, he may miss the key issue and give tangential responses.

So school report no difficulties, NHS SALT does not observe in class, only does formal assessment, where he scores average and his difficulties are missed.

Oh my God claw, your DS sounds so like my DS it is spooky!

Yes my ds speaks with expression, not in monotone, but his expressive language does become very monologue CHECK

he produces too much around his favourite subjects, in 'free' speech ie social situations. CHECK

More formal questions ie someone asking him about something, he can answer , but he assumes the listener has more knowledge than they do ie doesnt realise they dont know everything about him. CHECK

So you can have a conversation with him, but he can be quite random or 'boring' and go on and on! CHECK x 100!

He has an expressive face, he smiles etc. Although he doesnt always show the correct expression, he can smile when anxious for example. CHECK

Very affectionate, maybe overly so, always telling me he loves me, CHECK

he used to hug strangers too. OK FINALLY ONE HE DIDN'T DO!

Ds always appears to take change in his stride, not always because he actually does, but because he is also overly passive and wouldnt make a fuss. He would do whatever was asked of him, regardless of how he felt about it. But this causes him anxiety which he directs inwards. YES I THINK MY DS DOES THIS TOO

Eek that has freaked me out a bit - sounds like my DS is on the spectrum. Does your DS have a diagnosis of HFA/AS or something else? I'm not so sure about the results of the SALT assessment (thanks very much for digging it out) for my DS though - I did the 'smarties test' on him and he passed it so I tihnk he has theory of mind to some extent at least. Another 'test' I did was from Tony Attwood's book - I asked him to make a happy face and a sad face and he couldn't do it AT ALL - he just grimaced. Even my 2 yr old can do this so I thought that was quite telling.

If you have time I would be very grateful if you can tell me about your experience of getting a diagnosis - it sounds like your DS is pretty HF - did that make it a real battle? Thanks again for all your invaluable advice/experience

Skid, well not hugging strangers as such, he hugged the plumbers legs to say goodbye after he had finished working in the house, more inappropriate, as he just didnt 'get' greetings and goodbyes! ie its ok to hug nan when she leaves, but not a plumber The face grimace, is ds's smile, its evident in all his school photos!

Ds has a dx of general ASD, although i would say he 'appears' quite high functioning, he didnt appear as 'high functioning' as i thought he was, during his assessment for dx. The specialist SALT really knew what questions and assessments to do, to really highlight just how NOT high functioning he actually was. Even i didnt realise. He also has a dx of hypermobility, sensory difficulties, and Oculomotor defiencies type 2.

Ds has a high IQ, when tested by EP when he was 5, he was in top 5% of the population, which has served to hide his difficulties really well.

Ds was referred to paed, SALT, dietician and OT when he was 2. All developmental paeds told me there was no way ds had autism. His speech was delayed in that he couldnt pronounce certain sounds. OT put his difficulties down to being in the special care baby unit for 2 weeks when he was born. Dietician put ds's restricted diet down to me 'not being strict enough'

So we plodded along for another 3 years, until ds started school, then his difficulties became very apparent and i started to push for a dx. I was pretty much 'blamed' by school for his difficulties, as they too felt he didnt have ASD.

I was lucky enough that the paed who i got (we moved boroughs) specialised in ASD and was part of the 'ASD team'. After our first hour long appointment he said to me 'you do realise that your ds has autism'. Ds spent an hour sitting on the floor lining up cars, he also hid behind the curtain everytime paed tried to speak to him. Ds was then referred to the 'ASD team' a specialist SALT, EP and another dr type person (she was just known as a specialist in AS)

We had another 2 hours worth of assessments and then a final 2 hour dx assessment and he received his dx of general ASD. After observing these sessions, it was obvious to me that ds wasnt as 'high functioning' as i first thought. I did question his high IQ and the difference between HFA and the general autism dx he received. I was told although ds has certain strengths, this does not describe his 'functional' ability ie his ability to apply his knowledge to different situations. If you were to meet ds, chances are you wouldnt think he had autism at all. You would probably think he was very quiet and shy, unless you mentioned something of interest to him and he would then chat your ears off!

thanks for your reply claw - crazy week so no time to reply properly but will have a proper read when I get a minute. Thanks again