Have my perceptions changed???

trixychic

Ok so I put up a post a little bit ago. We are going through getting ds diagnosed. Not sure what he has although I am leaning towards add or autism. I know they are all on the same spectrum.

Lately though I have been noticing alot more stuff though. So I am not sure if

a) nothing is happening but because of going through the motions I am seeing things.... That may not be there.

b) everything is the same and now I am more aware of things I am picking up on alot more.

c) things could be getting worse and he needs help soon.

An I mad??? I'm afraid could be changing my attitude towards him (ie trying to be more understanding but letting him away with smaller things). I don't know what to do.

looksee

I know nothing, pretty much, about the autism spectrum, but entirely understand your confusion in trying to figure out what is 'real' and what you are making assumptions about. Maybe not expressed that very well, but I am agreeing with you. Would it help to keep a record of what you notice each day? You might find a pattern, or maybe realise that you are not seeing as much as you thought. If nothing else it would help if/when you get to the stage of talking to an adviser about it.

Bicycle

Our son is on the Autistic Spectrum - he has Asperger Syndrome. ADHD/ADD is not on the same spectrum as Autism. They are sometimes comorbid - co exist. But not every child who has ADHD/ADD will have Autism and not every person who has Autism will have ADHD/ADD.

As Looksee has said - keep a record. A tick-box record. Of the behaviours your child is exhibiting. And read. Tony Attwood is the expert on Autism, particularly Asperger Syndrome. He has a website and has written an excellent book on the subject which was my reference when I was exploring the area after my son was diagnosed.

Also remember that there are other conditions that are also comorbid including Dyspraxia (Amanda Kirby is the expert here and has a website and a book worth reading) and Sensory Processing Disorder. Dyslexia can also be present. Obstinate Defiant Disorder (ODD) IMHO has been popularised and given out as a diagnosis like the €10 vouchers in Dunnes. I'm very wary of it.

Also remember that ADHD/ADD and Autism symptoms can get worse during stressful times and ease off when there is less stress present. Our son's behaviour can be bordering on the normal at times and then there are other times when he gets what we call "Aspie Attacks" and he loses his ability to talk and gets very flustered. The last time he had an "Aspie Attack" was on our way home from holidays in Europe. We'd been driving for a couple of days and taken a ferry ride and were in the middle of a lavender farm. He just got a total sensory overload and just froze. Once the attack passed he apologised and explained that he was unable to do anything while it was happening.

But also remember that you will view your child subjectively. And you will need to be very objective as you engage with the various services. If your child is on the Autistic Spectrum then do a search for Middletown Centre for Autism. They are an all Ireland organisation who provide fabulous courses for parents and professionals.

Also look at various facebook pages started up by other parents. They are great places to get information and even vent on the days you need to vent.

Good luck with your journey. It won't be easy. There will be days when you want to scream with frustration. And other days when you want to dance down the road with happiness. Don't let the condition define either your child or you as a parent.

CiDeRmAn

I both have a son on the spectrum and I have worked as a nurse and a nurse manager in the fields of both Intellectual Disability and Autism Spectrum for the past 25 years.
Everything you have said in your post my wife and I, she is another person with the same work history as myself, have been through.
Initially we didn't think there was a problem.
Once it was pointed out we had family and friends tell us there was nothing to worry about.
We had an initial diagnosis that just made us see symptomatic behaviour in everything he did, but then we saw similar traits in other children and wondered why they and their parents were going through what we were.
Before we knew it we had a confirmation assessment and a brutal phonecall at 10pm at night from a real @sshole of an assessor to tell us our son was "completely autistic".
Then we started to question everything he did, was this an autistic trait, was that?
Soon however we were able to begin tease out the stuff that was simply the craic kids get up to and the stuff to pay attention to.
We could sense, thanks to our experience if nothing else, what we could help him manage, what he might manage himself and what we needed help to manage.
That last sentence is a tricky one, and it's there that early intervention is important.
The earlier you and your child are taught techniques to manage the everyday stuff that are a challenge the better, and this can make life a whole lot easier, but it's different for every person on the spectrum, they are all different.
As said already, a diary is very very helpful, and I'm ashamed to say we never maintained one.
But, in our field as professionals, it's one of the first things we keep, a clear objective record of observed behaviour and basing interventions on that, rather than a recollected set of things later on that become clouded with parental concern.

A big help is finding coping measures for your child, this can be wearing headphones or a hat, providing both sensory control and deep pressure.
Also, carrying a backpack can provide this deep pressure.
Again, every person is different so the interventions will be as different too.

Snoflakes is a group around Dublin of parents of kids on the spectrum and they can be a great support, I would suggest you contact them or similar and go along to a meeting, where they can help with many questions you might have.

looksee

A big help is finding coping measures for your child, this can be wearing headphones or a hat, providing both sensory control and deep pressure.
Also, carrying a backpack can provide this deep pressure.
Again, every person is different so the interventions will be as different too.

I do not have to deal with any of these situations, so I admit my query is merely interest, but can I ask what is meant by deep pressure?

CiDeRmAn

Deep pressure is using the feeling of weight upon the bones and joints, generating a feeling of security. It has roots in our evolution, and is present in "neurotypical" people too, when we enjoy a hug or a heavy blanket in the cold.
But, if you have sensory processing issues, as many people on the Spectrum have (as well as many not on the Spectrum I would add), a sense of being grounded, being positionally secure, is a good tool for calming the person, especially in times of stress.
If a person is either experiencing too much sensory input or too little, deep pressure can counteract and bring them back to some sort of equilibrium.
It is all to do with the minds proprioception, it's perception of the body's position in space, relative to itself and the world around it, we all have it and do it but, sometimes, this can be compromised and it generates an extra layer of sensory issues.
You sometimes also see it in people having an odd walking gait, as they receive a certain feedback and postural security from walking on their heels, on the front of their foot, they may slam their feet down as they walk, and so on.

Here's a good article on the topic, from the great Temple Grandin herself
http://www.grandin.com/inc/squeeze.html
This deals with her own particular use of squeezing to generate calm, but there are other ways to apply such pressure and, again, all people on the Spectrum are different and may not find everything works, just because it has worked for someone else.

Weighted Jackets are a good tool as well, and there are people out there charging a fortune for what is, essentially, just a jacket or a vest that is weighted.

We were encouraged to give my son chores that involved carrying heavy things, when we noted that he was becoming over or under stimulated, so carrying a heavy bag up and down the stairs for example.
In fact, the best thing we have used, and still use and he's 12, is a trampoline, it gives tons of joint compression, helps with co-ordination and keeps him fit!

looksee

Thank you, that is very interesting.

CiDeRmAn

looksee wrote: »

Thank you, that is very interesting.

You'd be amazed at the number of supposedly bizarre behaviours from people that turn out, on investigation and reflection, to be perfectly understandable responses to extraordinary circumstances.
We no longer take issue with people coming from traumatic experiences, be it as a soldier, a first responder or someone involved in a violent or upsetting incident/accident, citing PTSD as a recognised condition.
What we don't realise, or we are beginning to see, is that a similar trauma can be visited upon people with sensory processing issues and in everyday experiences, like too many voices, too much noise, too much flickering from fluorescent lights, and this, and our own lack of an appropriate response, can lead to a PTSD type scenario.
It is that understanding by us as parents and carers that will help build a trusting relationship and enable us to provide appropriate responses to reduce trauma and stress, de-escalating and calming the person effectively.