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MUCH HAS BEEN written about the pros and cons of having your child diagnosed as having special needs but the dilemma facing parents considering such a life-changing decision cannot be overemphasised.
For many parents, the grief associated with having a child with special needs occurs the moment their child is born – such as is the case when their child is born with an obvious physical disability or a development disability such as Down syndrome. Indeed, the use of ultrasound scans and amniocentesis has resulted in many parents knowing of their child’s disability even before birth.
However, for some parents, the signs of development delay only become obvious when their child fails to reach developmental milestones such as crawling, understanding and using language, or developing the motor skills needed to manipulate their environment. When this occurs, some parents will feel an overwhelming desire to know exactly what is “wrong” with their child and will enter into the lengthy and frequently stressful assessment process. Some parents, however, will “play down” their child’s underdevelopment either through fear of what the outcome of an assessment would be or, as is often the case, because they hope that their child is simply developing at a slower rate than his or her peers.
So, what are the positive and negative associated with having your child assessed and when is a diagnosis of a disability appropriate?
The positive aspects of having your child diagnosed with a special educational need is that such a diagnosis will enable clinicians to decide on specific early interventions which have been proven to have a profound impact on the quality of life for children at risk and their families. Early intervention therapies include speech and language therapy, occupational therapy, physiotherapy or behavioural therapy.
If your child is already in school and his or her difficulty is related to poor educational attainment, the results of an assessment should result in enabling the school to develop education plans which are individualised to meet the child’s learning needs. However, an assessment of the child’s difficulties should only occur when the school have tried in-school strategies – such as providing the child with a differentiated curriculum and learning support. Only when these measures have failed to result in adequate progress should an assessment be considered.
Often though the difficulties relate to a child’s behaviour, and the parent must decide if the extent and frequency of the behaviour warrants investigation by a child psychiatrist or clinical psychologist. Such children are often diagnosed with conditions such as ADHD which usually presents before the age of six and should occur in two or more of the child’s life situations (home, school, clubs, etc).
Unfortunately, a diagnosis of ADHD is often being made when the child has been observed in only one environment such as school and this is usually the environment in which the behaviour is occurring. Indeed, many parents report that their child behaves in a socially acceptable manner at home and that the root of the behavioural issues in the school environment relate more to poor academic attainment and the resultant lack of self esteem that often follows in the form of “acting out”, particularly in younger children who do not have the emotional maturity to communicate their feelings.
Also of concern is the emerging culture where having ADHD is somewhat fashionable and can be used by ineffective or overwhelmed parents to excuse their child’s behaviour. Often too, parents provide their young child with too much information on their diagnosis which can lead to children feeling resigned to behaving in the way that others view as unacceptable. Thankfully, this occurs in only a small number of cases. While it is often useful to provide a child with information on their diagnosis, children should be taught that while they find some aspects of daily life difficult, that this does not mean that they cannot learn the skills needed to minimise the difficulties associated with their specific disability.
Children from Travelling backgrounds are more likely to be diagnosed with mild learning disabilities or clinically significant behavioural problems and this is possibly due to poor school attendance or differing cultural norms relating to acceptable behaviour.
Non-national children, or children born in Ireland to non-English-speaking parents, often present with poor academic progress in the early school years and may be incorrectly diagnosed with learning or specific learning disabilities. This can be due to the challenge children face living in bilingual environments.
Another concern facing parents of children undergoing educational psychological assessments is the possibility that their child will under-perform on the day of their assessment due to external factors such as not getting adequate sleep or appropriate nutrition. Psychologists suggest that the scores should always be taken with caution and will reflect the child’s ability on that given day.
Some children, particularly adolescents diagnosed with Asperger’s syndrome, report feeling relieved that there is a reason why they feel the way they do. Receiving a label in these circumstances can actually result in a child’s self-esteem improving as they learn that they are not “odd” and that there are others out there who feel and act in a similar way to them.
In an ideal world, clinicians and schools could provide additional support to children following a “needs based” assessment which would identify the particular difficulties children are facing, and provide the specific supports to remediate those difficulties without resorting to labelling children. However, appears that in Ireland, where the “medical model” is still in effect, we are a long way off what is now seen internationally as best practice.
In the interim, each parent or guardian should decide what is in their child’s best interests by examining the advantages and disadvantages of their child being diagnosed with a special educational need. Where do you go for such an assessment?
If your child is under five and you have concerns about his or her development, talk to your community nurse who will direct you to the appropriate services. Alternatively, you may wish to discuss your concerns with your GP. Parents can also refer their child for an assessment of need through the Health Service Executive. Further information on this can be obtained by logging onto hse.ie where you can find contact information for your local assessment of need officer.
If your child is already attending school, it is likely that his or her class teacher has alerted you to issues relating to your child’s academic attainment, or perhaps behavioural or socialisation issues that may or not be occurring in the home. In this situation, ask the principal if your child could be referred to the National Educational Psychological Service (NEPS) for an assessment. The result of this assessment may require onward referral to other professional organisations but this would occur only with the consent of the parent.
Carol Coffey is a writer, living in County Wicklow. She has a degree in education and a Masters degree in behavioural disturbance. Carol is a teacher by profession and continues to work in the area of special education. Carol has used her extensive background in disabilities to bring the world of special needs to the wider population through her writing. Her new book The Incredible Life Of Jonathan Doe is just out now and published by Poolbeg.
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“Diagnosis can bring a sense of relief” -
It can also catapult you into an unknown, scary world when you realise you have a diagnosis and there are no services available for some years, depending on where you live. Lengthy waiting lists. You learn and research the diagnosis and realise Early Intervention is the KEY and the hope your child needs to give them a chance to progress and thrive but you could have to wait months or years.
When you finally get intervention and meet wonderful people along the route you get to the never ending brick wall, listening to departments lacking in resources due to budgetary constraints, not being able to provide a service. You rejoice when you see progress, no matter how slow it takes.
You are the voice your child needs and you will do everything to ensure they are allowed to achieve their goals.
You learn to praise and encourage and most of all love.
Excellent comment! Exactly as it is.
I completely agree about children being wrongly diagnosed with ADHD; we told parents that spanking is unacceptable and parents are still unsure of how to discipline and what works.
I have seen some truly disgusting examples of parenting including one parent who thought it was funny that their child was regularly biting other children in a playgroup. That child was diagnosed with a host of issues yet presented with no problems in playgroup when a new leader focused on that particular childs behaviour! We need to help parents with parenting skills instead of just giving a child a justification to behave in a way that’s going to leave them ostracised from their peers and things like birthday parties.
When I was a baby doctors tried to label me as someone with development problems just because I didn’t communicate in the way expected. My dad knew the doctors hadn’t a clue and well here I am years later with a college degree under my belt.
I’ve recently had a baby born with DS, we had no idea until he was born! The care and attention both he and I have gotten since then has been fantastic ! In fact I felt a bit smothered at the begining as we were trying to come to terms with this massive challenge both he and I would face in the future , I was so so worried about absolutely everything , but the systems that are in place for us are second to none! I am so grateful to all the staff in Drogheda and crumlin hospital and the public health nurses and the team from early intervention for making it so easy for us, they have given us space and also been there at the drop of a hat when we needed them! We have only just been told he will need heart surgery in a few weeks ( which was an absolute shocker when told) but with the reassurance and care I’m sure all will work out fine! I suppose I’m one of the lucky ones as I didn’t have to fight for anything , but who knows what’s around the corner and to every parent out there …. Keep strong and I’m sure everything will work out ok in the end ! X
I know of several people born with Downs who received such good early intervention that they have been able to function in mainstream classrooms, and do fine, and gain employment in the workforce. Not in Ireland, though.
Not in Ireland? Ireland is one of the best if not the best country in the world when it comes to Downs Syndrome. Don’t comment unless you are directly involved because you haven’t a clue about it. I know someone who knows someone is rubbish. Unless you are a parent of a child with DS like me or work directly with disabled people then your comment I’m afraid is pointless. Per head of population there are more people with DS in Ireland than any other country in the world and that’s why the facilities are good and the early intervention is excellent. All children in Ireland under the age of 5 have a combination of a speech and language therapist, a physio and an early learning teacher. The same services were not there 20 odd years ago so you can’t judge the progress children will make by observing adults in their 30′s and by what they do. The majority of children with DS go to mainstream school and thrive there. Sorry for rambling on.
Gar. It’s no good for rambling on *after* your abusive comments. News for you Gar, I have loads of experience in the field in Ireland and abroad. Compared with other countries Ireland is not up with the play. In Ireland a school principal has the right not to enrol a child with disability. Most common reasons? It’s too hard to get resourcing; other parents might be uncomfortable.
FWIW Ireland has such a high rate of child disability because there is no abortion. Not commenting pro or con abortion. Just stating from experience of colleagues.
Oh, Gar. I didn’t say I know someone who knows someone. I have first-hand experience.
Is that true? Ireland has the highest rate of DS? If its true surly we should be looking at why, or are we already?
Most of the risk factors for DS are well known so I assume we know why, if it is true that is. Our abortion laws could also be something to do with it.
Anyone who has worked in the UK will know that there are low rates of DS, CP, SB. They allow abortion and many parents take that option.
No mention of effect of speech and language delays and disorders on a child’s social and academic attainment. Specific Language Impairment, for example, where performance IQ is normal but language comprehension and expression is disordered, can cause severe difficulties and has been linked to bullying at a young age. Diagnosis is essential to gain access to appropriate services.
I have a son who was diagnosed at 4 and a half with a specific speech and language disorder, he was in the first percentile for receptive, expressive and phonological speech. Because it was so bad he presented with autistic and ADHD like characteristics.
This was picked up in his 2 year developmental. My phn referred my son under the 2005 disability act and received early intervention from age 2.5 speech therapy, occupational therapy, early intervention education group sessions and 1 to one.
He is now 6, a happy chap who is very popular amoung his class mates and who wins each adults heart with his big smile, big eyes innocent and funny behavior.
I wouldn’t change him for the world.
You are the voice for your child so don’t always listen to the so called experts, they are not always right. Only recently did we have our 4 yr old diagnosed with autism and that was only after we fighting with HSE and the so called experts who wanted to send my wife and I on a another parenting course. Thrust your gut instinct and fight like hell for your child because you know them better than anyone else and not these health professionals who only observe them for a short time
There is also of course the issue that a minority of parents actively seek a label for their child ….it lets them off the hook when the child’s problems are caused by poor parenting skills. You can all red thumb this ….but the truth is out there ….admit it, you see it everyday !
while I think the ‘excuse factor’ is a very real problem, be careful not to automatically assume that is the case. A brilliant parent with a child who has severe ADHD may be able to love, encourage, discipline etc their child that they’re only slightly more hyperactive than a ‘normal’ child – which for the individual is massive progress and the result of a lot of hard work. To an outsider, the child appears to be slightly unruly and its easy to judge that ‘a bit of discipline would address that’.
Michael, I personally know people who have sought and gained autism diagnoses for children who aren’t autistic. They were turned down by HSE professional assessors but then gained the ‘pay for the letter’ diagnoses in Dublin.
Do you have a child with autism? What do you seriously think these parents have to gain by getting an incorrect diagnosis of autism for their child? I paid for an assessment of my child not for his diagnosis when I went to see a highly regarded professor of child & adolescent psychiatry in Dublin. The diagnosis gave me NO access to HSE services (I paid for these for another six months until the HSE service provider finally assessed him & gave him services a few months after again). The private dx meant my son got a place in an ASD unit straight away, as the DoE accepted it,when he was just three. Early intervention is critical & my son is living proof of that.
Extra money on top of their family allowance, respite care (effectively, paid holidays), transport allowance, SNA/Resource at school… I have no problem with those who need it getting it, but telephone diagnoses, or a 20 minute diagnosis (with or without child present), a form letter, the expense for having to pay for the diagnosis all smell odd to me. Locally, if HSE turn you down, you’ll get the Dublin diagnosis. I personally know people who have.
Are you joking – do you think a slip of paper from a private assessor will give you access to DCA, Carers & tax credits? You have to provide multi disciplinary reports from experts, diaries, GP letters & school letters. Most people are refused first time & have to appeal, it’s a long & exhausting process. Provision of an SNA is not automatic & in mainstream, children with ASD usually have SNA access, not an SNA to themselves. Maybe things were different a few years ago before I had direct experience of the system but you know very little about current realities. If you do not live with a child with autism – you have no right to judge people unless they have admitted they defrauded the system. If so, I suggest you report them.
Sorry, Sara, but I am right up to date with current realities in my area of the country.
Well I just hope you have reported what you are so sure of so.
I think that a problem with diagnosis is that the reaction is often medical treatment.
ADD and ADHD are over diagnosed and too rapidly treated with medication. There are lots of different therapies that can be tried, from working with an educational psychologist to learn skills to aid concentration and organisation, to things like primitive reflex therapy that focus on correcting underlying physical coordination problems.
All kids are different and learn and develop in different ways. The first solution for behavioral or educational problems should not be a pill.
Smiley I feel for the people who have to deal with you “firsthand”…… Ignorance is not bliss…… its ignorance…….. I have five children and as they were born without visual markers or without physical disabilities I got a hard time because of their behaviours…….their refusal to communicate…… their aggression…….. their eating habits…… Not all of them presented all of the same problems but I had no idea what I was doing wrong….. the excuses given by the “professionals” (teachers… PHN) was that I was a young mother…… maybe I had PND….. was I abused as a child which might result in me having a dysfunctional parenting method……I dod a cookery course for the nutrition and eating problem…… I did photography to cure my depression….. I did ECDL to ease the separation anxiety….. I did a parenting class just to be sure to be sure that I wasn’t the odd one…… My eldest was diagnosed at 14…… Second diagnosed at 6…. Third diagnosed at 9….. Fourth Diagnosed at 6 (by the pay per diagnosis specialist) fifth diagnosed at 3…….. So how did I do it??? Was it me??….. am I faulty?? NO it is genetic……it was always gonna be there……. As for the state payments and “holiday money” you have no idea what you are talking about……… Apply for it for your “firsthand” I dare ya……With diffabled kids and Health and education systems that don’t work most of the time the applying for financial assisntance is a battle that many parents (me included) cant be bothered to take on…… FACT!!!!
No one buys a diagnosis for their child how insulting
Well smiley with all your “first hand experience” and knowledge of special needs services obviously you have had to spend months and months bringing your child to assessments, had to fight over and over for your autistic child to have access to an sna, had schools reject your child purely on the basis of them having special needs, had to fight everyday against the prejudice of ignorant people and their ill educated and informed opinions, had to pay privately for therapies that your child desperately needs that you can ill afford but the HSE waiting lists are endless so you have no choice….all of which I’ve had too and many parents I know have had too. You are such an expert after all….you personally “know people”…. Wow! Well I also work with people with special needs and have a sister with Down syndrome (in the uk by the way where there are many many people with that condition to further add to your extensive knowledge) your comments are ignorant, Ill informed and insulting to the vast majority of special needs parents who have to fight every day for every little thing for their child – especially your rubbish about grants etc which most of us spend months applying for before being routinely turned down over and over again.
Ignorance is bliss , have you spent hours walking the floor averaging 2 hrs sleep a night , have you watched your child turn themselves inside out screaming and have no medical /physical reason .Have you had to bring them to A+E for three years for chest pain at 8 feeling as if their going to have heart attack to be eventualy told this is panic and anxaty due to asd.. Have you not had an undisturbed meal ,bath ,sleep for 9 years , have you had to stop going on holidays ,dread Christmas ,easter bank holl because it stops normal routine .
Do you know that majority of people with asd children need some one home full time because it takes over your life ,familys struggle to function ,services are non existant resulting in holiday payments being used for essential equiptment or therapy ………….. Do you know there is no child phycolagy available for children after diagnosis in south east .
Btw smiley people don’t “buy” diagnosis for their child – they – like many and myself may I say have to go private because their service provider has had their staff cut back so much that they can’t do any diagnosis in time for parents and schools to apply for supports – there are cut off dates each year for this and any application needs to be accompanied by extensive detailed long reports that include the child’s diagnosis. We have been forced down this route even though it was obvious to everyone involved – Montessori staff – family and friends and our gp and HSE that our child had autism, because our HSE funded local service has had it’s psychologists halved in the past few years. It cost us four hundred euro which we struggled to find – but we did – otherwise our daughter would have received no sna or supports in school. That’s why people go private – because their kids will suffer if they don’t.
Come on Editor! A professional (Education) writing about the pros/cons of classifying a child against a standard norm and then a crisis of conscious! Seriously; she has studies texts that reinforce her position in labelling the child. These text are based on the perfect middle class white boy (girls aren’t rational) and then she waffles about how this process impacts on the parents and less so about how education policy links funding to these labels! It’s tardy professional musings!
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