Not forgetting ADHD......

When I think of Autism and ADHD I have this vision of two ginormous A's having fisticuffs and imagine that this is what it's like for our 'Bob' internally.  The two have some similar traits which often can lead to some confusion in diagnosis, but in 'Bob's case these two stood together like regimented soldiers!  Shoulder to shoulder!

 Until 'Bob' was actually diagnosed by the child psychiatrist with ADHD, I seriously thought our life was a journey that we were just going to have to walk down without any help.  I'll never forget the day after 'Bob's ASD diagnosis, we were given a website address, a 'thanks for coming along' and a virtual shove out the door, we didn't even get a leaflet!  We just managed, what else were we to do.  Just managing his day, responding to his behaviour, fighting for support, sitting in the bathroom for hours due to his bowel problems, and always wearing trainers because I was never too sure when he was going to scarper, well quite frankly I was so incredibly tired! 

There wasn't much fight left, and seriously I wondered how long I could carry on.  When my gorgeous little nine year old boy refused to go to school and then announced to Mr Autynary and I he wanted to be dead, I got my second wind.  Mortified that my child was talking about suicide, and death, and not wanting to be in this world was upsetting, but even more cutting was the thought that no amount of love we gave him would  soothe the pain  he quite clearly was experiencing.  An internal pain that he had no idea what it was, where it came from, how to get rid of it, or how to describe it!

Petrified that 'Bob's unpredictability and no understanding of consequence would lead him to take his own life, I insisted an immediate appointment with the GP.  I know we were lucky and not everyone experiences such a speedy response, but we managed to get a CAMHS appointment within the week.  The trigger for 'Bob's anxiety was quickly identified, constant change of teaching staff and a rather dreadful support teacher, and once addressed with school we were able to make necessary changes.  Thank god for the summer holidays!

The road was long, and there were lots of assessments, but when the psychiatrist explained that 'Bob' did in fact have ADHD as well as high functioning autism I was confused.  'Bob' wasn't jumping out of windows, or clambering out of moving vehicles, running around in circles constantly, or kicking the place in!  How shallow my stereotypical opinion was about ADHD.  

Everyone was surprised!  It turns out I wasn't the only one with that fixed opinion either.  Slowly, over time and with a lot of negotiation and tests, 'Bob' was put on ADHD medication.  It wasn't our first choice and we resisted for well over a year before agreeing, but 'Bob' was struggling at school.   He couldn't focus, was distracted so easily, quite argumentative and became this tight little coil ready to explode!  

I wouldn't go as far as to say it worked miracles because that definitely would be an understatement, but it did what it said on the tin, and more importantly 'Bob' was able to access the national curriculum.  He didn't spend days heightened on anxiety or so stressful that literally his and our lives seemed to just stop!  We've got used to living with our mate ADHD, we can put him asleep with a little white tablet for most of the day and respect him when he's not.  

At the moment ADHD and Autism are marching to the same tune, and 'Bob' understands the importance of  his medication (he even reminds me).  'Bob' can identify now when his medication is wearing off and if a situation is not working for him, well, we get to know about it before an emotional tsunami takes place.  We don't know what is going to happen; I hear varying stories about ADHD and possible cures. What I do know is ADHD doesn't have us 'Bob' has ADHD in more ways than one!

And the journey begins.....

There is this incredible difference between thinking about something and it actually happening.  I’ve been preparing myself mentally for our ‘Bob’s transition from what seems an age.  Still struggling to come to terms that my little man is now standing taller than I, and his shoe size is bigger than Mr Autynary’s!  A couple of things have happened in the last couple of months, which give us just a snifter of what is to come.

As many parents in the UK will be familiar with when our little angels or terror teens, whichever is your preference, enter Year 10 there is a rush to prepare them for the ‘outside’ world.  An experience, hopefully in a field of work they are interested in pursuing when the leave education.  I’m sure there are many of you out there know that when you rush something quite often there can be oversights. So when  Mr Autynary and I trundled off last November to the Year 10 work experience parents evening full of hope and exciting thoughts for our boy, what we didn’t realise was the difficulty he would experience in connecting with those typical jobs offered for work experience placements.  After the event we both knew that the information given did not fill us with the reassurances we needed to feel comfortable that ‘Bob’ would find this process accessible.  Shuffling down the queue, and it was quite clear we weren’t the only ones feeling that  way.  Conscious that the person we needed to speak to would identify us as parents of a child with ‘special needs’!  So uncomfortable was that turn to the right!

Our ‘Bob’ was dead set on trying to find his placement within Manchester Airport, he had it fixed in his mind and that this is where he wanted to go and there really was no backup plan.  There was plenty of confusion about the whole process, which just compounded all his anxieties.  There was an expectation that the students should take the lead and have that experience of sourcing placement, researching contact information, putting together their CV and talking to potential placement employers.  For ‘Bob’ that was just not going to happen, and he had convinced himself that it was up to me and Mr Autynary!  If you ask him about himself or ask him to make a decision, his response will be

 “Speak to her”, meaning me!

‘Bob’ does not favour conversation face to face, so how on earth am I going to get him to talk to someone on the phone!  Well, it didn’t happen, I can tell you, flat refusal!  The moment I raised the issue, he got into an almighty meltdown and shut down.  It would take days before we could even slip it into conversation, and with the constant fear that we would upset him we only manage this when he was in really good spirits.

I knew it was up to me to start this ball rolling, I’d already informed school, we were having difficulties, but we still felt that although they were talking to ‘Bob’ about it in school, there was an expectation that he had to complete this himself.   It’s the ‘doing’ bit that was the problem and it was practical help we needed.

 

Taking the bull by the proverbial horns, I spoke to the work experience placement officer at the Airport.  She was a nice enough woman, somewhat patronising and after asking me where we lived and what school ‘Bob’ went to informed me that we didn’t meet the Airport’s criteria because we were out of their catchment area.  Interestingly enough, she then followed this through with informing me about the criteria of other employers, and typically they would insist on speaking to the young person concerned.  By this point my defensive hackles were up, and I had to explain that ‘Bob’ was on the autistic spectrum, to which she said

“Well, you have to say that one in the first place!” “You still don’t meet our criteria, though!” and “Well employers will still need to speak to the young person!”

Ya’don’t say Sherlock!! 

By this point I am livid and with desperation started flying off messages to people I knew who might be sympathetic and help!  Then I’m outraged, if I’m struggling how many other parents of young people with Asperger’s or high functioning autism are having the same difficulties.  When you actually start to strip back the logistics, support for the young person and risk assessment of the individual needs, the process takes on a different dimension.  One which I think has been overlooked!

How many parents out there in desperation for their children to experience the same journey like their peers, are relying on taking them to their own place of work, or family or friends!  Even more upsetting how many children are left behind at school?

‘Bob’ is now resided to the fact that there is no hope!  I have had some contact from great supporters, but yet nothing has been forthcoming, and conscious he won’t be left behind I’m resided to the fact that he will have to come with me and experience one week working as a volunteer!  Not exactly the industry our ‘Bob’ wants to work in when he leaves school, but if it means he will experience the process of going to work and a working environment then we can tick this off.   Worryingly though how many young people with autism do just that, volunteer, because there are not the employment options out there!  Food for thought.