A window not a box

Photo from here
When E was diagnosed, the paediatrican asked us how we felt about it, especially if in 10 years time it was decided that autism was no longer an appropriate diagnosis. That in fact, he never had it... he just presented with many features of it.

As I said in the last post, the paediatrican was uncertain about E's diagnosis. He felt E's eye contact was uncharacteristic of autism. He did feel, however, that with all the other features presenting and our and E's need for help it was an appropriate diagnosis.

We were grateful for the question. A thoughtful, insightful question. But for us it wasn't an issue. We didn't have a sense that maybe we were labelling our child with something unnecessarily. That somehow we would destroy his childhood due to a misdiagnosis. It is not a 'label' that he needs to be aware of for many years yet and the label gives us opportunities to intervene and help him in ways we could not without it.

My husband's answer to his question was simple 'Autism is a window, not a box.'

By diagnosing him, we aren't placing him in box and defining him by medical categories. The diagnosis is an invitation to see the world differently. An invitation to look at the world through different eyes, a different lense. People with autism see, hear and experience the world differently to the rest of us. They process information differently. Sight, sound, smell, taste and touch are experienced differently. They are often over-sensory or under-sensory. They play with toys differently. They take interest in odd things, often small things, see detail that you and I would never see.

This is our invitation (and yours if you know E) to enter into his world. It will stretch us, mould us and challenge us - every day. But this is the key to helping E function in this world. When we understand some of his unique perspective we can slowly build bridges for him to learn things that come so naturally to the rest of us.

This is why we refuse to call him autistic. And never will. He is a child with autism. A subtle but important difference. Autism should not be his defining feature. It is an opportunity, an invitation, a window.

We pray E never feels we have boxed him into something he is not. Instead, helped him to grow into all he can be - looking through his window into the world.

Daily struggles... language & communication

There was a degree of uncertainty about E's diagnosis. His autism is mild and it is harder to diagnose especially when the person is young and has severe language delay. (Language delay can cause a child to mimic similar symptoms to autism due to the mere frustration of not being able to communicate). E has significant eye contact for a child with autism and this caused the paediatrician some pause. However, he also noticed other strong features of autism within E such as the way he appropriates language ( or misappropriates it).

Autism causes a significant social deficit in people. They cannot or have limited reading of social situations, voice intonation, facial expressions, body language etc. Normal social cues are often missed by people with autism. So teaching social acceptable behaviour is very difficult because there is no understanding of these things and no natural ability to assume these behaviours - they have to be learnt and mimicked.

People with autism will have difficultly in 3 main areas.
•Social communication: knowing what to say to other people and understanding what they are saying to you.
•Social understanding: knowing what to do when you are with others or behaving inappropriately (apparently oblivious to social rules).
•Imagination: pretend play, make believe and fantasy.
Source: Autism Northern Ireland

Source here

Language occurs within a social context. Often the meaning of words (especially in English) change depending on the context and intonation of voice. A person with autism will not naturally sense these social subtleties. It makes perfect sense why a child with autism will struggle with language.

E is building up his word bank slowly. At nearly 3, he probably has close to 200 words. (An average 3yr old would have 900-1000 words). They are nearly all in single word formation. Many are still words that he mimics. He is very slow at building spontaneous language. When he does use spontaneous language it can sometimes be out of context. This is a classic symptom of autism. For example, E has said 'bye dog' in a certain context which has obviously stuck in his memory. Now, whenever he says bye to something or someone else, he will also say 'bye dog'. He has also learnt the phrase 'Look at that, frog!' Now, whenever he chooses to point something out he will often use that phrase and call it a frog! There seems to be no awareness that there is no dog or frog to speak about!

Speech and communication are a daily struggle for us. For a period of time when E had no verbal or non verbal way of communicating we had major behaviour issues. Then he began to use some single words and start to take us by the hand and drag us to what he wanted. His tantrums became a bit less frequent. Now, they are on the increase again, because he is trying to speak more words which I don't understand.... if I don't respond immediately to E's needs, there is a major meltdown.

In comes visual aids for communicating. Well, the concept of it anyway. I actually haven't gotten around to printing and laminating all these aids yet. But I will soon. The idea is that E can point to or bring to me things that he wants. I can have some on a key ring for when we are out of the house. They also aid in establishing routines or helping children understand what is going to happen and when. You can place them into a sequence of events. I am looking forward to seeing how these help our day to day.

In my hand

In my hand I hold E's official diagnosis. E was only diagnosed last week and today I hold the report.

In my hand I read of his social deficits, his severe language and communication delay, his lack of emotional sharing, his lack of appropriate play, his impairment in the use of multiple non verbal behaviours, his preoccupation with restricted patterns of interest, his repetitive motor mannerisms.

In my hand I hold the key to getting help and support and accessing services for my son and for myself.

In my hand I see words. Clinical words. Words which put him in categories.

In my hand I do not see the glint in his eye that is occasionally given.
In my hand I do not see descriptions of the belly laugh which although only sometimes heard makes people stop and listen and smile.
In my hand I do not see the depth of cuddles that this boy loves.
In my hand I do not read about his love of animals and his fascination for all things small.
In my hand it does not reveal the level of joy felt when one has the privilege of glimpsing the real E, when this boy lets you in to his world.

In my hand is only a small part of the picture.

In my heart I hold him.