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.

[ouryve]

I don't think it matters, really. I have one bright and verbal and one with learning disabilities and severe speech delays - just about 9 and only just beginning to speak.

I've sniffled into far more glasses of wine on behalf of the bright verbal boy, to be honest. He really is a tortured soul.

[Liliuk]

If what you are looking for by asking the question is finding out how your child will be growing up, I think it depends on a lot of factor including finding the right way to support all of his need.....my son is a bright boy but quite severe. We found ABA and although I wouldn't call him High functioning by any mean now, I still think he is functioning to a higher degree than if we had done nothing (hope it makes sense anyway). And as you rightly pointed, like many NT children, he has strength in some areas and struggle in other. I think by separating them your are doing the right thing; this is how you will identify the areas you need to act on to help him. My only benchmark would be my own DS and he wasn't as able as yours. Hope it makes sense. All the best.

[2boysnamedR]

I have heard that diagnosis is needs based and a very autistic person who copes well in life might not warrant a diagnosis but a less autistic person who struggles with life would warrant diagnosis. That was on a documentary "understanding autisum" which quite frankly left me more confused!

My ds is dyspraxic, there's a dyspraxic scale but no one will tell me where on the scale he is. I doubt I will find out either. I can understand why you'd want to know

[chocnomorechoc]

Autism affects everydody in a different way. My Dd has speech delay (severe), learning diffs (severe), scored high in her Ados (iirc 18) but is less severe in many other ways: she goes to school, no anxiety, very warm amd caring, no issues with routine but we know she will never be independent.My friend on the other hand has a DS with Asd, very bright and HF but riddled with anxieties and very challenging behaviour, school refuser etc.

Who is more severely autistic?

[senvet]

I think it is pretty artificial - with some EP reports I have seen the tests describe a function in the bottom 10% as severe, and under 25% as Moderate difficulty. But then the next test may define things in a different way.
Anything in the middle 25-75% is counted as in the average range for some tests.

Most people have a spread of functions with some outside the average range.

So whilst your dc may not be in the average range for language, you are doing a great job to have him happy at home, well done

[JonathanB]

Hi ShootingStar

As a practitioner I would like to say that you present the observations extremely usefully, it is rare for parents to be able to speak openly, frankly and without lots of elaboration when describing their child's needs. This is such a blessing for your little boy, well done!

Many of the things you describe 'could' be autism, they could also be dyspraxia or specific language impairment, or could in fact all be environmentally caused by the delayed speech you describe. This should not concern you, it is more to prepare you that neuropsychological assessments tend to focus on what is 'primary' in terms of needs and they frequently overlap considerably with other labels.

As a quick question, I am curious whether your son has had any support/intervention from a Speech and Language Therapist?

If so, what effect did it have, was it the cause of or your son starting to speak more?

If not, I absolutely recommend you make this your first port of call instead of seeking a diagnosis of something else first.

This doesn't preclude any other possibilities, however it is an immediate intervention which may provide considerable support both to you and your son and the impact can be really sudden in terms of his quality of life.

If he has had some input from a Speech and Language Therapist/team I will be happy to offer some other thoughts if you wish!

[ouryve]

My boys are very much like the two extremes you mention, choc

[JonathanB]

I have worked with ASD students in education post 16, currently completing a masters in SpLD and Dyslexia.

The issue with not having SALT first is that it will most likely be the first recommendation in any case, as it will need to be established whether the speech delay is primary.

Quite slowly the SEN environment is moving towards a response to intervention process, in other words measuring severity of condition by monitoring progress with intervention.

It may also simply be more helpful than seeking a label immediately. The SALT has no downside with the described situation, it will almost certainly be very useful. If the SALT progresses things quickly (and I have seen some astoundingly fast progress with SALT) it may be that the other issues resolve themselves to a large degree also.

At that stage it may be worth seeing if progress continues on it's own, or whether other concerns remain persistent.

If the SALT resolves the concern then we have successfully avoided an un-necessary and quite invasive battery of tests and a lifelong label which may mask other difficulties.

If the SALT doesn't resolve but ameliorates then it is both beneficial to the child and also removes an environmental factor which would cloud the findings of assessment process.

If the SALT does nothing then it is extremely interesting and will, again, make the assessment process afterwards better targetted by removing it as a factor.

One could make the request for an assessment anyway and also request SALT (or pay for it privately if that is possible), my personally feeling would be that the SALT intervention will provide either a lot of upside for the child or a lot of information for any subsequent formal assessment.

[JonathanB]

I should probably clarify, reading back it is unclear!

I have worked with ASD Students in Secondary and Post 16 specialist provisions, not mainstream.

[chocnomorechoc]

Jonathan - I cannot think any child that I know with an autism dx that has not haf Salt involved.I wouldn't think hat a child with a significant speech delay would get an Asd dx without having had Salt involvement.

[JonathanB]

Hi Choc, I agree.

Shooting made no mention of it though, which is why I brought it up!

[chocnomorechoc]

zzzzz , I think I read a few research papers that concluded that Salt has on Asd type speech/language issues only very little impact.

[JonathanB]

Your experience is very valid though, being a professional doesn't make us right!

The truth is that all cases are different and have particular environmental issues.

From my perspective, I will always notice the delayed speech first. If I was assessing for Dyslexia it would be highlighted in big bold letters and underlined several times!

What you say as a parent is obviously also valid, as the concern is from a different position. Namely, we all (quite rightly) want the best for our children as swiftly as possible.

My expectation is that if SALT has not already been offered it will be the first offering, therefore if we try to satisfy all requirements ask for both a referral for a psych assessment AND a referral for SALT. The latter should be relatively swift due to the evident delayed speech and him nearing school age.

[JonathanB]

I find SALT to be very useful, particularly when language knowledge is good but expression is poor. I have seen nearly mute 3 year olds be speaking fluently by 4, with immediate impact within 2-3 months.

What it can do is either help a child begin to express themselves by introducing new stimuli, or very quickly have an idea of how a child is trying to communicate and introduce language through that.

What a SALT can also establish therefore, probably quite quickly, is whether language delay is an environmental issue, internal development or just in need of a different route to get going.

It is one of the more effective strategies I have observed, especially with ASD who oftenbhave a great deal of empathy and understanding but either struggle to underatand the emotion or to express it appropriately. Personally I find it more effective more often than another talky therapies involving children.

[chocnomorechoc]

My child has severely delayed understanding. SALT did next to nothibg for us. Most Salts haven't had any idea how to engage Dd in the first place.We made much more progress with Aba.

[fairgame]

SALT don't 'do' ASD where i live unless there is an actual problem with the child's speech. DS didn't get any of the SALT in his statement when we moved to this county because he doesn't have a speech problem and the NHS saw him once and discharged him. He only gets SALT now because he is in a specialist placement and they have their own therapist and SALT programme.
The NHS is really shit towards our kids sometimes.

[JonathanB]

Sad to hear about both your experiences. Sadly I think it is very common in most mainstream schools and it does require either extremely dedicated parents who learn to fight the system, or a placement in a specialist school that understands the needs.

I am very used to speaking with parents that have had to fight, my first challenge is often to avoid them thinking that I am their next opponent!

[JonathanB]

Everything you say is true of course, however specialists can either offer more targetted interventions or more conclusively point to a different cause. It can start with pictures, sounds, gestures etc. Anything in which responses become regular is another route to communication and language.

I have no research papers sadly, as SALT is not my specialism! I can only say that my experience of their work with older asd and language delayed children has only ever been positive.