The Diagnosis Part 2

After the paediatrician, we met with the Educational Psychologist (EP).  The EP came into school and observed him, spoke to the teachers and also spoke to us.  She also spoke with him on his own.  I found this appointment really helpful, to sit and discuss the issues we were having and the fact that she was able to offer explanations and help.  It was the first time we got answers and help! Also the EP said that whatever the diagnosis, she would be able to help and support us.  It was great to have the link between school and home so we could work together on solutions.  The EP introduced us to social stories and helped us in preparation for different situations ie hair cut and why we go to school.  The EP also discussed theory of mind which is where i feel we had a lot of difficulties.  He didn't feel the need to explain things and would get angry if I asked, as he believed i knew how he felt, when of course I don't know.  When she was able to explain this, it helped me to empathise with him.  Normal development means we understand we have feelings and that others have feelings, they are not the same and we have to talk to each other to understand one another.  In my sons case he had feelings and would expect me to know them ie i'm cold/hungry and if i didn't instantly solve his problem/feeling then he would be angry at me.  The EP came to school a couple of times for the diagnosis and post diagnosis, she is still able to help and offer us solutions/understanding.

After the EP we saw the Speech and Language Therapist.  I wasn't sure what to expect at this appointment because he has good language skills - or so i thought.  The therapist looks at his understanding and processing of communication along with his body language.  I introduced myself but I had to prompt B to say hello etc.  Again at this appointment there was lots of history taking and then there were lots of tests.  There were lots of pictures and he had to explain what is happening and what they were feeling.  He was also given sentences and he had to point to the picture to show he understood what was meant.  He is quite literal and doesn't always understand the meaning behind words eg 'pull your socks up' and couldn't always work out what others were feeling by their facial expressions, on some picture scenarios he was way off.  We only saw the therapist once.  Watching him go through all these different tests I could see how and why we were having issues with some things and it gave me a clearer picture of his capabilities so I could help and prepare him better.

In between these appointments we still saw our paediatrician and we also had our consultant appointment.  The consultant appointment, again lots of history taking and examples.  It is not the same history we go over in detail each time but different examples of his behaviours/obsessions.  They gather evidence for the triad of impairments for the autism diagnosis.  Looking back I wish I had read Tony Attwoods book or researched aspergers more thoroughly and then I would of been able to give the examples knowing what they were after, rather than reeling off bad stories about my son that made me feel a failed parent without understanding the relevance behind them.  I thought that you had to have a diagnosis before you could access any help and i thought that 'whats the point in researching something he might not have?'  I didn't realise how much of a benefit it could be.  I think because of my earlier experiences with medical professionals, my confidence was quite low and felt i'd be taking a resource away from someone who might really need it.  I was wrong - I needed it.  I think it was also partly due to my own journey of accepting I have a child with ASD.

When incidents happened that affected others, it was awful.  I felt awkward telling others 'its because he's autistic' without the official diagnosis and I didn't want people to write him off without giving him a chance.  Judging by our parents reaction - How would others react? There were times when it was evident there was an issue and then I felt I had to give them an explanation.  The school were good in allowing me to direct complaints to them but also I knew I had to battle it out too.  It took a while for the diagnosis to come through but in between this time his behaviours could no longer just be put down to age and I would have to be strong.

The EP appointments were really good and she gave me lots of points to take away, research and implement.  All the professionals were very helpful in helping me understand my son and how to make life a bit easier for us as a family.  I acted on their advise as we both want our son to fill his potential and want to help him as much as we can.

The consultant saw my son for one to one lone testing and to also measure his academic ability.  The end of the appointment I was called in to say there would be a meeting with all the professionals (a multi disciplinary hearing) to decide his diagnosis and then there would be a follow up appointment to discuss the outcome.  This felt like a long wait!

The Diagnosis: Part 1

After the community paediatric appointment, we felt a little hopeful.  It wasn't all in our heads. We were looking forward to getting to the route of the issue and knowing the best way to support our child.  I want my child to stay in main stream school and I want him to have successful relationships and mix well with others.  I was pleased that he was noticed as being different to others and felt this was finally being acknowledged professionally.  From this appointment she was very clear that we were looking at autism but i felt uncomfortable telling anyone, as it wasn't official.  Also because of the different experiences i didn't know who I could really trust or if the testing would reveal anything.

We were extremely fortunate that our first paediatric appointment came through fairly quickly and we only had to wait a couple of months.  The first paediatric appointment was a long one.  We went through lots of history and answered lots of questions.  We had to fill out questionnaires regarding his abilities, behaviours and milestones.  They took my sons measurements and weight and then went on to test him.  She then said he would need further testing and would be seen also by a speech and language therapist, educational psychologist and then a consultant.  They would all then meet to discuss the case including a report from school detailing why they pursued this along with evidence at a multi-disciplinary hearing and then I would know the results.  The tests were quite a commitment and were certainly thorough.  Its not a quick process at all.  We were fortunate and the diagnosis took about a year - it can take 2 years plus.

The tests during this appointment were done with me present.  He had tasks like naming everything that was in the picture that began with S.  He had to describe emotions and what was happening in another picture.  One of the questions that she asked my son was - describe a time when you were happy.  He was unable to answer.  It was heart breaking - he is not an unhappy child, he just couldn't recognise what a happy emotion is.  He said what he liked but had no idea if this made him happy or if that meant happiness.  I had just assumed he knew this emotion.  He speaks really well and has good language skills but its also evident that his understanding or processing of language is at a very different level.  I always verbalised 'i feel angry now' or 'when you did this i felt cross' i had never thought to verbalise happy feelings as we tend to just read someones face and expression to know.  The doctor suggested telling him how he's feeling, so when i know he's happy, to tell him.  It felt odd.  We then saw this doctor about 6 months later for more testing, as there is only so much testing you can do in a couple of hours! We now see his doctor every 6 months for his general check up but we also see other health professionals ie EP and different specialists in between.

I won't detail every test stage but give a brief summary of the events.  I think its important to give you an outline as it isn't a wishy washy process to get a diagnosis.  There is so much in the media about disability and benefits that I wanted to show you this is not something that can be faked or made up by the parents (also autism does not mean you are automatically entitled to disability benefits).  After we had our diagnosis, someone, did think that autism was a con to get benefits and really was just uncorrected bad behaviour... I assure you this is not the case!  We are dealing with other peoples prejudices or ignorance about autism as well as own pre-conceived ideas.  We've had to do a lot of thought searching and changing.  When it comes to being fraudulent, I'm not sure how you could and your child lie for so long, to so many people and to such great detail.  My children quite happily blurt out internal family things along with other peoples surprises or birthday presents - no prompting needed! 

If you find yourself down this journey I would recommend recording down examples of your child's behaviours and outbursts.  The doctors always ask for examples but it can also help you to identify a pattern and help to recognise triggers when you look at things less emotionally. 

Next post outline of the professionals....

10 fingers... Part 2

I wish I could write of a straight forward diagnosis from that meeting but sadly that was not the case.  At the meeting with playschool the manager said, she believed he only had mild autism and not to worry.  That it will probably only come out when there are big things going on his life and it disrupts his routine. I now know this is not true, that it doesn't come and go. I remember at the time feeling a bit confused.  Well surely he is or he isn't? what is autism? I went home from the meeting and we discussed it with family members and eventually i phoned my health visitor.  There is no family history of autism so when we discussed it with our parents they were really angry and assured us he was 'normal'.  Their understanding of autism at this point, is of people in special schools/homes unable to communicate at all and he did not fit this belief.  The health visitor was livid that such a meeting had occurred and came straight over to assess him.  She said we must be very upset and that autism can only be diagnosed by a consultant paediatrician after extensive testing.  Jon and I were now both very confused.  We knew he was different but we also knew he can communicate well.

B talks just like an adult, he can communicate day to day with no problems. If you met him in an environment he was happy in, then he would appear just like any other boy, maybe a little eccentric but no different. The health visitor said he may have some behavioural difficulties but its probably due to new baby brothers and new home.  She gave me some techniques to help him to try and communicate his feelings and not to worry about the other stuff.  She said 'He's obviously a sensitive boy that reacts to these situations'.  Looking back this also was not very helpful and perhaps if I hadn't felt inadequate in parenting, ashamed or prideful, then I may have been able to talk about how difficult things really were - instead i felt i needed to keep up appearances as no one would want this for their child.  I felt ashamed for feeling relief at the initial suggestion.  From everyones reactions, this seemed to be an awful outcome.  How awful was I to have been relieved at such a suggestion.  I just felt this confirmed my inadequacies and i was a failure, my bad parenting was the cause of his behaviour.  We put it on a back burner and continued on with life.  Playschool were more tolerant of his behaviours from then on but they didn't go away and no help or support was offered.  Life was hard but we just carried on and didn't look into it any further, thinking that playschool had it wrong.

I was really dreading B starting school.  I loved the school we chose and was so pleased he got a place but thought, he's going to get suspended or expelled within the first term.  I seriously considered home schooling as i just didn't think it would ever work.  On B's settling session, which is one hour, he screamed for 45 mins of it.  He just calmed down when it was time to pick him up.  He thankfully had an experienced reception teacher, who had lots of strategies under her belt.  The first day was awful but the teacher was prepared and he had a good first day (eventually).  We did have quite a few problems that year but he seemed settled.  He is very bright (exceptional is what his teacher called him - in terms of academic abilities) so i think he was classed under being eccentric in terms of his behaviour.  At school they could stretch him which i thought well perhaps that's what he needed and that eventually his behaviour would sort itself out.

This was not the case - autism is not something that you grow out of. His behaviours continued and it could no longer be put down to his age or lack of maturity. In year 1, we were called into a meeting with his teacher during the first term.  She discussed his behaviours and said in her experience she believed he was on the autistic scale and it was worth referring him to a paediatrician.  I thought great at least we can get this sorted out.  Our families were kind of in denial about it but said well at least you'll get this all cleared up and this silly autism cloud hanging over him will disappear. 

I also went to the GP to discuss with him and wrote out a list of behaviours that were out of the ordinary but he really wasn't interested in anything I had to say.  As far as he was concerned he had met my son, he was a normal boy and nothing I had to say on the matter along with anyone else was going to change that.  He also said 'well the EP (educational psychologist) will just say he's having a few behaviour problems' but nothing to worry about it.  Before I knew it I was out of the door and that was the end of that, according to our GP.  At this time I felt I had no choice but to believe him - after all he's the one with the medical degrees, he knows about this stuff - I'm just a mum experiencing children for the first time - what do I know in comparison?

His first real appointment was with a community paediatrician and by real I mean the first medical person to take the appointment seriously.  This was arranged via the school referral as the GP route was a dead end for us.  I'm so thankful now that the school pushed for this appointment to take place.  This came through at the end of year 1.  We took a long extensive history of his behaviours.  It was strange discussing him when he was sat next to me but he really didn't care.  I told him we had a special appointment to find out more about him.  When she went to take his heart rate he completely freaked out due to the stethoscope being cold.  As he was getting older these tantrums are a lot less common in his peers so it was becoming more noticeable.  He went from complete calm to massive rage in seconds.  The examination had to stop.  I was glad she could see his reactions and based on his history, we were referred to the child development centre under a paediatric consultant.

So the story of his diagnosis begins....