What is the difference between mild and severe autism? Is my son mild or severe?

[Shootingstar2289]

Seems a bit of a 'daft' question but my son is 4 in a few weeks and awaiting a diagnosis for autism. I felt like I've been shrugged off for a few years being told 'it's just a general speech delay' and 'he will catch up'.

It's not until he was 3.5, professionals started to take notice.

1. My son is very speeches delayed. Literally only said a few words up until he was 3.5. Now he says hundreds of single words but only occasionally ps them together in 2 or 3 words. Usually sticks to one word only.

1. He is a VERY happy, giggly, affectionate child. He was a very smiley, content little baby. He was such a happy good baby. I could take him anywhere without a problem up until he was around 2..

He is often too clingy and I can't go for a wee without him stood next to me.

1. His behaviour can be very demanding now, especially in public. He's obessed with pressing buttons - ATMs, arcade machines, ticket machines, door opening buttons and often screams when I take him away. But this is improving and takes less notice to things like this now.

He is terrible for screaming when he doesn't get his own way. In public it can be bad in shops.

He runs off a lot.

When he was younger I used to take him to toddler group and he stood playing with the doors and the taps rather than play. He has a thing about opening and shutting doors and gates.

1. He doesn't play with children his age but loves company of adults and older children.

1. He is very clumsy.

1. At pre school he has improved a lot. He will sit still at story and snack time now but this took a while but he struggles to share toys etc. He is also hard to move from task to another.

1. He has no sense of danger whatsoever. He runs off and has attempted to run into roads but I'm always there to grab him. I try to explain but he doesn't understand everything and does it again.

1. At home he is very good! I can get on and do housework if he's sat playing, doing puzzles, colouring etc.

Although his speech is very delayed. He doesn't seem 'severe' in other areas related to autism. He can be very well behaved but it just takes one thing to upset him and he cries. But his tantrums never last too long.

He says please, thank you and sorry appropriately.

His eye contact has got better over time but still not the best.

Ah, if you are experiencing SALTs that do not set targets then I take back all I said. Some form of target setting is the core of all good professional practice, if they are averse to it then that says a lot!

SALTs I know and have worked with have clear ideas where they want to be in a few weeks, few months, a year etc. All changeable of course, as learners may need more time or are finding the adjustment to support problematic, or of course exceeding expectations.

I have experienced, occasionally, fairly unambitious target setting if middle management decide that failing to meet targets is unacceptable. This is a shame when it happens, as it can have a limiting factor on how ambitious therapists and educators can be.

'I have experienced, occasionally, fairly unambitious target setting'

I have no idea where or with whom you work Jonathon but I'm starting to doubt it is anywhere in the UK, except perhaps North Wales.

My son has had 7 years of SALT across 4 PCTS and I have never seen a target more ambitious than 'improve social communication skills', or 'interact more'. Even now, with a fab SALT I have no idea what his actual targets are, though I suspect that is because she is now leaving it to me. Sensible woman.

I have worked across a few specialist schools in the southwest, if anyone wrote that as a target on an IEP without a breakdown of how to get there it would have been pinged back with an offer of a 1 to 1 in appropriate target setting!

Okay, sorry, it was more:

improve social communication skills by having direct SALT once a term and 2 sessions a week with a TA in school, using visual support materials for 20 minutes. Outcome: 'improved social communication skills'.

You've been discharged?

Why? Was that with your encouragement?

Grrrr. Sorry zzzzz but you need to put that in writing.

'Just to clarify, child who you assessed to be severe across the board, you're discharging on the basis that he is starting school and they can refer whenever they like, even though he has already been referred, which is why you did the assessment, presumably, otherwise what the feck were you doing in our house assessing him?'.

And: 'Also like to clarify, that you feel he will need no prior SALT planning to ensure his school start is given the best possible chance of success due to potential communication barriers being broken down in advance and support and training specific to his needs being in place'.

SALTs (generic) are such a lazy profession. Sorry, but they really are.

HI Starlight

You are correct, that target is just as crap. No criteria for auccess, no time frame. Im surprised it got through because usually someone with oversight does catch these, however it may also be that many places are not that hot on target setting which is a shame.

I am also slightly horrified that a child has been discharged just before school for that given reason. Did they give it in writing? Either way I would say a firm letter of complaint is in order.

The thing is Jonathan, that you can complain, and so get eventually get some SALT, - and then what usually happens (IM increasing experience) is that you are then obliged to attend useless appointments where they refuse to admit they haven't got a clue what to do, and spend 3/4 of each session taking case history and updating, with the last 1/4 fudging something or handing you barely readable photocopies of some Black Sheep thing they have in their filing cabinet with the order to feel free to contact them with any questions, whilst not giving you a phone number that anyone ever answers.

Honestly, when I started HEing, I felt obliged to have a SALT come and was actually HOPING they'd discharge, certainly expecting them to dance out of our lives forever, but then they went and sent us someone fantastic, so I do know, that SALT of the good quality kind does exists, but learning from my own and the experience of others, I'd say that it is pretty rare, or that even where good, it is so diluted and so loaded with anti-accountability deliverables, to be not worth having.

zzzzz I have no idea what to advise. It is possible once you have an EHCP you could get the SALT provision costed and then ask for direct payments and hire someone privately possibly. That is the theory of what the new system offers. Not certain if the reality would allow it, but might be worth asking.

DS2 had roughly termly SALT input, with the odd visit from an assistant (who can deliver prescribed therapies, but not assess) in between for about 18 months (nothing prior to that, as he was deemed too severe and unresponsive to benefit). We've had one single assistant visit since local paed SALT service got transferred, under enforced tender, to a neighbouring health trust, late last summer.

His 1:1 got the odd (two) call asking how he was doing since then. Last time, his 1:1 got shirty and suggested they came and visited, for a change.

This has been the calender year when he has begun to speak regularly, rather than occasionally and has, through his own efforts, simply by speaking and listening (and arguing, the lovely little sod) begun to overcome his severe verbal dyspraxia and begin to enunciate clearly. Even in the past few days, probably helped by growing teeth, sssss is now no longer always shhhh.

What better time would there have been for some actual expert guidance, rather than mum listening and working out which episode of Alphablocks he's trying to repeat?

Virgin care told me back in 2012 My ds would get salt at school. All backed up in email by my lovely la sen area manager. Unfortunately lovely la sen manager has since said in statement it's not a educational need.

I really do hope the slt is of use to language disordered and asd kids. My lang disordered son is the one I'm fighting statement for. The asd one needs to go to a specialist school where interventions are set and monitored by SLT. Makaton, pecs all under the guide of slt.

So if slt really is useless claptrap I can now relax and drop the tribunals and forget specialist schooling for non verbal toddler as they are both buggered and beyond help. I have to belive that's not true as I can not get pecs / makaton or any words out of this kid and alone I have exhausted all known methods to get toddler to communicate by any means.

Hi JonathanB - loved reading your message to shooting star at 11:58
I have had a terrible time with the "professionals" it's been a confusing time and we are still not clear and have our own thoughts......my sin hit all of his milestones either spot on or before expected but he never progressed with speaking, we had advice from our dr to wait and the 27month review said he still has time, he says words and knows loads of flash cards, rarely uses more then 1 word at a time but can say 3 I've heard him. He's 4 end of September and is a loving, giggly little boy who's never had any issues until and my husband started trying to force him to speak, then he dropped eye contact but when he wants something he will use eye contact and regularly uses eye contact at home and some strangers but generally poor in school etc, he has never played with toys in an odd way never had any strange behaviours, only worries was the speech, he does flick his hands in front of his eyes before he runs but has never been that naughty and defo never had to do things in any particular order. We have seen paediatrician and they said autism because if eye and speech issues. I know my son has some issues I'm not in denial but there's something telling me it's more of a speech issue. When we was seeing SALT they said to us twice they don't think any underlying issues so it's confusing! Can you tell me more about the speech and communication processing disorder as wondering if might be the problem? Thanks

Hello there , I came across your reply on a thread I was reading as I am very concerned about my 20 month old son , he is displaying a lot of signs of autism , primarily having no speech. If you could reply to me with some advice I would be so greatful as you seem very knowledgeable in this area . Many thanks , Kelly.

Same here...

@kellbelle92 has he seen a speech therapist yet?

Hi, no he hasn’t it’s been a long and frustrating 5 months of speech therapy wanting to wait until he is 2 , I have now rang up and demanded a telephone consultation which I have next week.

@kellbelle92 I have to say that I have also had an absolute nightmare with speech therapy my little boy has been on the waiting list 19 months and has just been given an appointment, have you discussed your concerns with the health visitor?