New here...son's new diagnosis feels like the end of the world

[daisy5678]

My son was 6 last week, and was diagnosed with severe ADHD (severe H bit) when he was nearly 4. He was statemented at 3, and (after a big fight with the LEA) got full time one-to-one support at school for the first year, partly because he was so violent. Last year, in Year 1, he had 24 hours' support and some things improved, but concentration still poor and refused to write or draw, would only read. The summer term saw the violence and tantrums come back in a big way, usually triggered by being asked to write something.

He's classic ADHD, so that diagnosis wasn't a shock. I'd guessed it.

But yesterday he saw his new psychiatrist for a meeting about medication and she spent 2 hours asking questions about various things, and she thinks he's autistic - higher functioning, she said, cos he's really bright - along with the ADHD. She's meeting me next week to do some kind of questionnaire.

I am a high school teacher and have only worked with severely autistic kids and a couple with Aspergers, and I just did not think my boy could be autistic because he is so emotional and empathetic and caring - not flat and emotionally cut off like I have seen in the autistic children I have taught.

The psych said all his little obsessions (like light switches, plugs, locks, windows) and his weird reactions to smells, tastes, textures and the lack of eye contact were indicators. The occupational therapist says he is sensorily defensive, didn't really understand that label but know that he was referring to the way my son hates too much noise and movement and gets really distracted by it. I've always just thought that was the ADHD!

I just find the label so much scarier than ADHD, because I've always known that if the one-to-one and normal behabiour management and fish oils etc. didn't work, then we could try medication as a last resort, and it would probably work. But autism sounds so much scarier. I feel like I knew loads about ADHD but this is a whole new area.

Feel like I'm out of my depth now as I don't know enough and don't know what to say to his school now. And I just didn't think he was autistic - he constantly interacts with everyone, not withdrawn or anything. I don't really know what I'm asking for here. It's just a stream of consciousness kind of post, I guess.

"not flat and emotionally cut off like I have seen in the autistic children I have taught. " erm I know you're upset but perhaps not the best forum for a statement like that.

My severely autistic son, has many problems but he constantly interacts with everyone. Sociability is not a problem for him. TBH you'd probably benefit from reading around the subject., or trying some local support groups so you can see the variety that there is. ADHD and AS often overlap. You may find something like Jaqui Jackson's book multicoluured mayhem useful. Her children are real mix.

Hi
yes before yopu get scared based upon assumptions I would take a deep breath and do some research.
My DS is quite severe end of spectrum but is the most affectionate child you could imagine and likes kisses and hugs and is a great playmate for his siblings ( as long as he is in charge of what they play ).

You have coped with your sons issues before and you will cope with this he is your boy and this diagnosis hasn't changed him has it. If you coped with him without that label why will you not cope now? Is he not the same child?

Quite a few children start off with a dx of ADHD and then go on to get one of AS or ASD. My ds doesn't have a dx but i am sure he is on the spectrum. He has a statement too to help deal with his behaviour.

I know its hard to hear the words but as the others have said he is still your son and a label doesn't change him in any way.

They are quite often co-morbid conditions. And dyspraxia/lexia IIRC

Although ds doesnt have a dx he is on the waiting list for assessment for AS. I suspect he wont get a dx as i dont think he ticks enough of the boxes really. However when the paed told me he thought that from the behaviour I had described he thought ds had AS it hit me like a ton of bricks too. I had read loads and so I knew that this was a possibility but to hear the paed say it made it more real.

"Flat and emotionally cut off" doesn't describe my 2 boys either. Ds1 (ASD) spends a lot of time interacting with others. He also needs time by himself but will happily talk to anyone. Ds2 (AS) also has times where he will withdraw from everyone but has always been sociable and is particularly talented in charming little old ladies.

It sounds as though you would feel a little better if you knew more about ASD. The stereotypes of autism are usually very different to the reality. Tony Attwood is good as a starter. Jacqui Jackson and Luke Jackson's books are also good as a more personal perspective.

Getting a dx is a shock even when you are expecting it. I hope things get better for you.

My older son is very affectionate and loves going up to adults, clambering in their laps and playing with their hair and poking their faces (he likes to make chins move up and down . ). And I know with myself that whilst I was not physically or verbally affectionate to my parents or sisters that did not mean I wasn't emotionally attached to them.

Jesus! The idea that my son is 'flat and cut off' really makes me laugh (hollowly). He's extremely emotional. Often very affectionate & cuddly, but odd. And absolutely won't leave light switches alone. Am very frustrated with my ds atm, but he's anything but flat.

I'm sorry you are so upset though. Any new dx is a horrible shock and you are right, the public image of autism is horrible, and often totally inaccurate. I remember one magazine article about a woman who 'accidentally' married a man with Aspergers. She admitted she's married him on the rebound, had never loved him, and was a needy neurotic, greedy hag who kept making ever more extreme demands on her gentle, reliable, kind and loving husband, yet the feature was all about painting him as the freak and included a 'fact box' saying things like 'people with Aspergers have no emotions'!!!
With stuff like that about, no wonder you feel bad.

For dh and his family having autism meant being like Dustin Hoffman in Rainman. They've had a lot to learn

Read up on the subject. The Tony Attwood book is a really good one to start with. I found the more I learnt the less scary it was.

Also how does he interact? All children with aspergers interact IME, it's just usually a bit different or odd. Ds will sometimes talk 'at' people - very loudly! I really notice the difference in the quality of his conversations after I have been with other children the same age.
Do you have other children? Is his interactions like theirs?

Coming to terms with a dx is emotionally difficult, it takes time. Your child hasn't changed as a person but your expectations for him may have.

As a mum whose ASD son is in mainstream your "flat and emotionally cut off" speaks volumes about some mainstream teachers understanding. I hope your son is nurtured by caring, understanding, accepting staff as it makes a world of difference.

I think Rainman has quite a lot to answer for.

Does anyone else ever get this.... you have cause to tell somone that you have a child with autism . You are then greeted with huge delight as they say "ooh I know - they are like genius' at numbers and stuff arn't they"
Well actually not always.

( Sadly my sons only truly outstanding talent is farting)

It is very common for ASD to be linked to other diagnosis/difficulties. My chap has aspergers, dyslexia and dyspraxia. It is the dyspraxia that causes us tons of problems and it does overlap considerably with the ASD side. He won't write either. He is, however, the most emotional person in the world and is the best big brother ever to our other son. A full blown ADHD chap such as yours must take quite some handling and hats off to you - much of what you are doing to cope with his ADHD will work to cope with any ASD type thing you get. The compulsions re light switches, etc, will get better (in my experience) although they do drive you bonkers at the time.

Remember to balance the media presentation of ASD with the actual reality - it pays the media (because it makes far more interesting watching/reading) to focus on the more extreme end - whether that be in behaviour, emotion (or lack of it) or savantism.
I too couldn't believe my son's diagnosis because he was such a fun loving, cuddly happy chappy because he didn't equate to anything I read. I think there is more literature available now but take it at your own pace - some love to research, others find it easier to avoid and take on little bits at a time - whatever works for you. And just as ADHD children are all different - so are all ASD.

lol pagwatch.

my son has recently started writing and we have discovered he knows everyones car registration! Doesn't help with the "rainman" comparison thing though!

lol pagwatch
Ds has just mastered armpit farts - what joy

Flat and emotiojnally cut off DOES describe one of my boys actually, only the higher functioning one though. Describes him well sadly.

give yourself time, a diagnosis of any kind is a shock to the system and the period afterwards is a time of mourning, almost bereavement. I ws completelya ware what ds1's dx would be, but nonetheless it hit me like an experess train, and I don't suppose i'm really clear yet of the shock (DS3 was referred for more severe asd within a few months).

there's lots of books out there, but also try the NAS. if there's a support group near you, going along and experiencing the multitudes of eprsonalities that ASD can encompass may well help a little

didn't mean to offend, but I did say that MY EXPERIENCE of teaching children with autism has been those who have been flat and emotionally cut off. I have only taught about 6 and they were all quite severe. I didn't have any SEN training on teacher training, or perhaps a couple of hours on dyslexia as I teach English (it is shocking, isn't it, how little training teachers have), so you see, I can only really go off what I have experienced and as you say the general perception.

As you say, I need to do some more research. That's kind of why I came on here - to find out some more - but I have clearly offended people instead.

Dont worry teachermum - its clear you didn't mean offence

I've read loads because as i said I find the more i know about it the less scary it is but some of the best advice and support I've had from the Special needs board on here.

Some of the best advice and suport I've had has been from the special needs board

It's Ok. You are having a really hard time. You know, the dx might help because you will probably find that some of his extreme reactions actually make perfect sense in the context of an ASD diagnosis & his sensory problems, which will mean you may well be able to find more effective interventions.

Thats a good point Aloha

We found that when we looked at ds 'unpredictable' behaviour as being part of ASD it actually made sense. Thats part of the reason I am convinced he is on the spectrum - because it makes sense of his previously unpredictable behaviour.

All the little things are starting to make more sense. Like the light switches and obsessive sweeping (ever since he was 2 and got a toy cleaning trolley) and the way he converses so bizarrely and loudly with no concept of speaking with someone, just at people.

He's an only child, so I always thought that that didn't help him to get on with other kids - that and the hitting them if he's not in charge, of course.

I explained a lot of things away with the ADHD though.

Buying some books from Amazon on the other screen!

His Annual Review is in September, so need to also decide what to start asking for in the Statement, not knowing if anything different is needed or what. The OT was talking about wobble cushions and screens. I remember saying after his Statement came through that that was the last hurdle to jump over...yeah, right!

Thanks to those who've offered helpful comments...I am feeling shellshocked, but in a purposeful way of wanting to find out more.

he sounds pretty typical I'm afraid teachermum!
My ds is so loud we tell him there are aliens out there with their hands over their ears complaining about the little boy on earth with the loud voice. Talking 'at' people v typical too. Once you have a dx you can help him, and hopefully the interventions will reduce his frustrations and so reduce the violent outbursts - possibly more effectively than medication ever could. Does his school have a social skills group?

He may need a place to go in the classroom where his senses are not getting overloaded. They need to back off on asking him to write IMO as it is triggering these extreme reactions. In children with ASD I think violence is a sign that they are completely stressed and overloaded - often having too much sensory input.