Are We Diagnosing Learning Disability Often Enough?

Over his ten years of life so far my son has ‘collected’ a fair list of diagnosis. First he was given ‘severe autism with global developmental delay’, then six months later the genetic condition ‘Neurofibromatosis Type 1’, then a few years later two complex eye conditions, a year later a third eye condition (a tumour on his optic nerve), two years later epilepsy and in the last few months cortical dysphasia which at first appeared to be a brain tumour! Every one of those diagnosis was given by medical professionals, geneticists, therapists and neurologists. Yet one diagnosis seemed to just ‘happen’ over time that everyone knew about yet no-one spoke about: learning disability.

I knew my son was ‘behind’ others from as young as a few months old. He was ‘late’ to hold his head, give eye contact, respond to his name, speak, interact with his environment, crawl, walk, use a spoon and so on. There wasn’t anything in fact that he wasn’t late at. Before he was even two years old I was told verbally he had the woolly and hopeful diagnosis of ‘global developmental delay’. Wether intentional or not it very much gave the impression that one magic wonderful day my son would suddenly ‘catch up’ with everyone else and all would be perfect. When autism was talked about that became the ‘dominant’ issue and the global delay was rarely mentioned.

Until suddenly without anyone saying anything I received a standard letter from an appointment listing my son’s diagnosis and on it I read ‘learning disability.’ There was no appointment to diagnose, no waiting list to join and no discussion. His ‘global developmental delay’ just magically changed to ‘learning disability’ and that was it.

Yet for so many others that two worded diagnosis seems to never be mentioned. Why is that?

Party it seems to be due to an increase in genetic knowledge. We can now break down genes to an amazing level and more and more children and adults are being diagnosed with rare genetic conditions. While these conditions remain rare it is common for all ‘symptoms’ including learning disability to be generalised under the umbrella of the genetic condition. While years ago the opposite may have been true and the person had a general learning disability now we see the genetic abnormality to be the cause and therefore often lump everything under that one diagnosis. Perhaps as more people get diagnosed with the same genetic conditions we may find that not everyone with that condition actually has learning disabilities and therefore adding ‘with learning disability’ would be a more helpful addition to any genetic diagnosis.

Another reason seems to be the increase in autism diagnosis. I see more and more children diagnosed on the autism spectrum who do have clear learning disabilities but who can not get the latter diagnosed because of a (wrong) assumption that ‘it’s all part of autism’. Yet according to the National Autistic Association, the leading UK charity for autism here are the facts:

Between 44% – 52% of autistic people may have a learning disability.

Between 48% – 56% of autistic people do not have a learning disability.

Autism, on its own, is NOT a learning disability.

Autism, according to Wikipedia is described as follows: ‘Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviour. Parents usually notice signs during the first three years of their child’s life.’

Where as ‘learning disability’ is described by Mencap, the leading charity for people with learning disabilities as: ‘A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.’

Mencap goes on to say that around a THIRD of people with a learning disability may also be autistic. By default that means two thirds are not.

Autism and learning disability are two very different conditions.

I am thrilled that we are progressing with genetic knowledge and diagnosing more and more genetic abnormalities and differences. With knowledge comes power. I am also delighted that we are becoming better at picking up both children and adults who are autistic. But I do hope we continue to make sure that everyone, like my son, gets a diagnosis of learning disability when necessary because without it we are denying both present and future support (it’s a life long condition), limiting educational support, and leaving children and adults feeling failures because they don’t understand why they are struggling.

Oh and let’s not only make sure we continue to diagnose learning disability when necessary but let’s make sure more parents, professionals and medical experts explain that global developmental delay is unlikely to mean ‘catch up’ and actually is just a fluffy pre-diagnosis to learning disability.

Let’s tell people the truth. There is no shame in learning disability so why hide it?

My son isn’t hiding his learning disability and neither should anyone else.

13 thoughts on “Are We Diagnosing Learning Disability Often Enough?

  1. Like ‘The Autism Diaries’ commented, my blog friends in UK with children on the spectrum all say that diagnosis are avoided so NHS doesn’t have to provide services.
    Whatever the reason, you’re absolutely right. Clear, direct language in the diagnosis should be used. A learning disability is nothing to he ashamed of. No disability is shameful.
    💌

    Liked by 2 people

  2. The WHO also list learning disability and autism separately, listing the percentage of those who are autistic AND have a learning disability. They absolutely are separate things and it is bonkers to lump them both together as if they automatically go hand in hand. Exasperating. A really important blog post.

    Liked by 1 person

  3. Oh I hear you Mirium. Both mine were given the woolly and hopeful diagnosis of global developmental delay before the age of 2. Then a few weeks ago our paediatrician said, almost as an afterthought on our way out of an appointment, that they both need to change to learning disability. No further discussion. You’re right, it’s such an important discussion to have.

    Liked by 1 person

  4. The term “Learning Disability” used to be called Mental Retardation in the US now it is called by the social justice warriors in the medical,social services and legal fields “Intellectual Disability”. We have a term “Learning Disabled” it meens dyslexia and dsygraphia and ADHD. This “Politically Correctedness” about not diagnosing learning Disabled or Intellectual Disability is harming children and young adults and seting them up for failure and even death due to lack of need services like physical,occupational speech and mental health therapies and other needed services that can not be provided without the “grim and biggoted” diagnosis of “Learning Disabilities”. The terms “Menatl Retardation” and even it’s new term “Intellectual Disabilities and Developmental Disabilities” have stigma. This stigma is rambled on about by SJWs because of “past isolation and abuse in institutions”. Get you child eveauated for “Learning Disabilities” by a developmental pediatrician or psychiatrist and to heck with people’s complaints! Yes, Neurofibromatosis is associated with “Learning Disabilites” known in the US as “Intellectual Disabilities” . The people at the Children’s Tumor Foundation are to SJW to admit it because of Politically Correctedness thus harming the very people they claim to protect.

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  5. You’re right, learning difficulty and autism should be clarified diagnosis’s…autism is not always an intellectual disability. And learning difficulties are still steeped in shame. It’s a hangover from when people with disabilities were seen as cursed. That attitude needs to be brought into the light and torn up, so people with learning difficulties can have that diagnosis without it leading to a lifetime of disrespect and low expectations.

    Liked by 1 person

  6. I’m a little confused though. How can Autism not be considdered a learning disability but then 50 percent do have a learning disability who also happen to have Autism? I’m not being difficult, just confused 🙂

    As for global developmental delay, why not just say that the child may never catch up to his or her peers? That might be harsher to hear, but does delay not mean that they may catch up? X

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  7. Very True Miriam

    I work with people with Physical and Intellectual Disabilities. some who also have Autism.

    I don’t like the term Developmental Delay as it does give the impression that a child will catch up.

    This is false because as if a child let’s say walks at five and talks at six. the other five and six year olds who are not delayed have moved on in their skills.

    It does not mean the child who walks and talks later than usual won’t progress and learn.

    They will. at their own pace.

    Liked by 1 person

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