Advice For Parents Trying
To Get A Diagnosis

Often parents have a difficult time getting an answer as to what is causing their children's inexplicable behavior. Over time, they may visit pediatricians, psychiatrists, clinical and educational psychologists and general practitioners. In many cases, parents find out through their own research, as I did, what is ailing their children. This is not the end of the road, however. Often it is the start of a new one. After all that, parents then have the difficult task of getting a firm diagnosis for their children.

Children who have displayed challenging behavior from a very young age could be suffering from Attention Deficit Hyperactivity Disorder (ADHD). On the other hand, it's important to keep in mind, your child may have a different disorder, for example, Asperger Syndrome, Conduct Disorder or Dyslexia. In any case, in order for these children to get the most appropriate medical, educational and managerial accommodations possible, they need some sort of diagnosis.

Here though, highlights the issue of whether or not to 'label' children who suffer from this range of childhood conditions. During my time manning the ADHD support group telephone helpline, I repeatedly encountered the frustration of parents whose children were left in diagnostic limbo, so to speak. Here in Britain, this was evident on a large scale.

Many was the time a parent would say to me that their specialist didn't want to 'put a label' on what was ailing their child (ren). Although one can see that labeling could bring into effect self-fulfilling prophesy in some cases, surely children who are obviously ill or disordered NEED a label (or diagnosis) to give a framework to the outside world of what would be expected of them.

Personally, I have had to fight tooth and nail to get 'labels' for my child. To have my child diagnosed the first time, I had to travel outside my community. However after coming back under the same authority recently, I have again had to cause waves to get in writing that my son also has Asperger syndrome (high-functioning autism). My specialists, in turn, have gotten frustrated with me because I HAVE to know what is the matter with my son, but I say this:

• Without a proper 'reason' for a child's difficulties, a parent cannot go through the necessary grieving process enabling them to come to terms and go forward.
• Diagnosed children get far more educational, medical and social accommodations that they are entitled to, than the child who does not have this so-called 'label'.
• Children without diagnoses, or with wrong ones, simply do not have their educational or medical assistance tailored exactly to their needs. What use is it for a child with Aspergers, whose most profound difficulty may be in comprehending everyday social situations, to have a statement of special needs which focuses mainly on his handwriting difficulties, when the help which is available would be much better utilized addressing the most acute presenting problems.
• A parent needs to KNOW, in order to move on. In simple terms, once a diagnosis has been made the parent can then educate him or herself all about the condition in question and how best to deal with situations which arise.

British professionals must somehow be made to see how this 'label' moves a situation on. In many other countries parents don't have this difficulty. Here parents often wait many, many years for such a label, which never comes. These are the parents whose children are excluded from school, who have dropped out of school because of underachievement, who are depressed, maybe unemployed, possibly abusing alcohol or substances...or even dead. So please, all you British professionals out there, never be afraid to label a child. You might just save their life.

So, what should a parent do if they are having difficulty getting a firm diagnosis? Well here are a few suggestions which might just help when you next see a specialist:

1. Go along and make it quite clear that you feel your child is suffering from ADD or ADHD. Try to get documentary evidence from school, in the form of report cards, behavior tick charts or letters, etc. If you have school reports outlining the particular difficulties, all the better.
2. If possible try to fill in a diagnostic criteria before you attend the appointment, otherwise you are wasting time. (Time your child hasn't got to waste). If you have any books or information leaflets referring to the behaviors your child shows, highlight them with a felt pen, and be insistent.
3. Make sure your specialist knows about these kinds of disorders. You need to be seeing a pediatrician or possibly a psychiatrist for initial diagnosis. It is no good if you have to wait months for your appointment if your child is going to be assessed by a drama therapist or practice nurse! (It does happen!) Before you agree to an appointment with this person find out what experience they have in ADD or ADHD. Ask which diagnostic tools they will be using.
4. If the secretary, or even the practitioner hasn't a clue what you are talking about, ask to be referred to someone who does. Be insistent. Also ask whether they are prepared to prescribe appropriate stimulant (or other appropriate) medication. Again, if not, ask to be referred to an experienced pediatrician who will. If they do not know of anyone to refer you to, ring your local Support Group who will be able to tell you the name of your nearest ADHD specialist.
5. Then, tell who you would have been seeing that you will be writing a letter to the health trust (or local medical board) voicing your concern about their lack of knowledge in dealing with the problem of ADD.
6. If you do get to see someone who does know a bit about ADD and ADHD, but who is reluctant to diagnose either way, ask IN WRITING why they think your child DOES NOT fulfill the criteria for ADD/ADHD.

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