Part 2 – on the road to a diagnosis

By 2006 our relationship with the school had deteriorated.  We were fed up with them not listening to us and blaming us for our son’s difficulties.  Even more worrying was their lack of interest in learning difficulties and/or disabilities and their lack of will to investigate further.  By now my son’s behaviour had escalated to include moments of late night escapes from our home, threats to self-harm and our house being subject to attack during one of his rages.   He was only 8 or 9 years old.  Things were desperate.  No longer could I accept the idea fed to me over the years that my son’s problems were due to his gender and immaturity; no longer could I accept the school’s apathy and disinterest.  I knew something was wrong, I could see something was wrong and it was up to me to find out what.  So ignoring everybody around me I did two things.  One I made an appointment with my doctor and two, I clicked on the computer and researched dyspraxia and ADHD, the two conditions that my son appeared to have.

On looking up dyspraxia and ADHD, whilst these conditions explained part of my son’s problems, they didn’t explain everything.  Something was missing.  I felt I was looking for something else to describe my son’s problems, but I did not know what that something was.  Nevertheless this was not a futile research for I came across an organisation called The Hyperactive Childrens Support Group who claim to be the “UK’s leading proponent of a dietary approach to the problem of hyperactivity”.  I contacted them and they sent me comprehensive literature on dietary therapy including the Feingold Food Programme.  I didn’t follow the Feingold Food Programme (it is quite complicated) but started at a basic level by removing all food additives that appear in even our most staple of foods such as certain types of bread and squash.  By the end of the week not only had I become an avid reader of food labels but there was also a subtle change that I can only describe as less tension in him and in our household.  His problems were still there but there was less intensity which proved a huge motivator for me to carry on, as I still do today. 

As well as this minor progress, I also wrote down a list of my concerns about my son and headed to the doctor who looked at my list and admitted that he had no idea of these sort of things but would refer us to the paediatrician at our local hospital.  At long last we had action.  You know I have total respect for that doctor because he listened to us, he did not make assumptions and was intelligent enough to tell us that he didn’t know what the problem was but would help us find out.  That, to me, is professionalism.  

 So a few months later, we found ourselves (husband, me and son) sitting in the peadiatricians office going through all the usual health check ups.  Except for his asthma, everything else was physically fine with my son so the next step was to do an ADHD assessment which entailed a questionnaire for the school and a questionnaire for home.  When the results came through, it came as no surprise that once again the school reported our child as calm and within normal limits whereas our questionnaire showed the opposite.  The paediatrician declared it was not ADHD and that was that.  Well it would have been if I hadn’t asked whether he had dyspraxia to which the doctor asked how I knew such things.  By now I was quite prepared to fight back, so I explained that I had researched dyspraxia and that it appeared that my son showed signs of the condition such as difficulties in sports, an inability to tie shoe laces and ties, problems in getting dressed etc.  Eventually the doctor gave up and said that he could refer our son for further assessment if we wanted, but there was a long waiting list.  I was desperate and I grabbed the opportunity.  I said we would wait and indeed we did, for over a year.

In part 3 I’ll discuss his assessment and diagnosis.

You may also be interested to read:-

Part 4 – Getting a diagnosis
Part 3 – “I’m dumb” – the issue of self-esteem
Part 1 – school, special educational needs and my son

2003 – first school year – difficulties emerge

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10 Responses to Part 2 – on the road to a diagnosis

  1. Aspie in the family says:

    >To: mum's the word – that must be interesting (and insightful) working in family services. I agree with you about there is more work to do about raising awareness on the autistic spectrum. One of the good things of blogging, I guess, to discuss what it means to be a parent:-)

  2. mum's the word says:

    >What I find really shocking is that if we didn't fight for our children the outcomes would be very different. I now work within the area of family services and I am horrified by the way some professionals still talk about parents. There is still a lot of work to do in raising awareness and dispelling some of the myths that surround Autism and Aspergers (especially amongst the professionals!)

  3. Aspie in the family says:

    >Thank you SuperLittleMen. I agree it is shocking; it makes me wonder about the role of 'parents' in society. There's loads more to come!

  4. SuperLittleMen says:

    >Gosh, so much what you write I could of written, its frigthening what a common theme this lack of interest / taking notice of us parents seems to be country wide. I look forwards to part 3 with interest

  5. Aspie in the family says:

    >It was hard to pursue it, when I didn't know what I was looking for. Im glad I did though:)

  6. Fiona says:

    >I'm always amazed at the lack of knowledge amongst so many professionals regarding these conditions. Well done for pursuing it. Self authorization to undertake such things is the hardest part. Fiona xx

  7. Aspie in the family says:

    >Hi Jen. Great to hear you got an early diagnosis and intervention. I would love to see the system improved too – it'll be interesting to hear the governments response to the consultation paper on SEN that went out a few months ago. Not sure when we'll hear anything.

  8. Jen says:

    >Our path wasn't too long, but only because we pushed it and went private in the end, just to get answers. I know for a fact I would still be waiting (now 18 months after diagnosis) and possibly have lost out on all that intervention and have much bigger problems that we did originally. I really really wish that there was some way to speed these assessments up for parents, it isn't like we make these things up, it is out of desperation that we need the help! Your story is, sadly, all too common. Big hugs. Jen

  9. Aspie in the family says:

    >Hi Rachel, thanks for commenting. Its reassuring to know I wasn't on my own in having a long path to diagnosis – maybe one day things will improve:-)

  10. Rachel says:

    >sorry that you've had such a difficult path to diagnosis- I think a lot of us SN mums have that in common :)

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