A new diagnosis of ‘profound autism’ is under consideration. Here’s what parents need to know

When it comes to autism, few questions spark as much debate as how best to support autistic people with the greatest needs.

This prompted the Lancet medical journal to commission a group of international experts to propose a new category of “profound autism”.

This category describes autistic people who have little or no language (spoken, written, signed or via a communication device), who have an IQ of less than 50, and who require 24-hour supervision and support.

It would only apply to children aged eight and over, when their cognitive and communication abilities are considered more stable.

In our new study, we considered how the category could impact autism assessments. We found 24% of autistic children met, or were at risk of meeting, the criteria for profound autism.

Why the debate about a ‘profound autism’ category?

The category is intended to help governments and service providers plan and deliver supports, so autistic people with the highest needs aren’t overlooked. It also aims to re-balance their under-representation in mainstream autism research.

Autism should not be seen as single condition with one cause, says scientists. 

This new category may be helpful for advocating for a greater level of support, research and evidence for this group. But some have raised concerns that autistic people who don’t fit into this category could be perceived as less in need and excluded from services and funding supports.

Others argue the category doesn’t sufficiently emphasise autistic people’s strengths and capabilities, and places too much emphasis on the challenges that are experienced.

What did we do?

We conducted the first Australian study to examine how the “profound autism” category might apply to children attending publicly funded diagnostic services for developmental conditions.

Drawing on the Australian Child Neurodevelopment Registry, we examined data from 513 autistic children assessed between 2019 and 2024. We asked:

• How many children met the criteria for profound autism?

• Were there behavioural features that set this group apart?

Because we focused on children at the time of diagnosis, most (91%) were aged under eight years. We described these children as being “at risk of profound autism”.

What did we find?

About 24% of autistic children in our study met, or were at risk of meeting, the criteria for profound autism. This is similar to the proportion of children internationally.

Almost half (49.6%) showed behaviours that were a safety risk, such as trying to run away from carers, compared with one-third (31.2%) of other autistic children.

These challenges weren’t limited to children who met criteria for profound autism. About one in five autistic children (22.5%) engaged in self-injury and more than one-third (38.2%) showed aggression toward others.

So, while the category identified many children with very high needs, other children who didn’t meet these criteria also had significant needs.

Importantly, we found the definition of “profound autism” doesn’t always line up with the official diagnostic levels which determine the level of support and national disability insurance scheme funding children receive.

In our study, 8% of children at risk of profound autism were classified as level 2, rather than level 3 (the highest level of support). Meanwhile, 17% of children classified as level 3 did not meet criteria for profound autism.

Our concern

We looked at children when they first received an autism diagnosis. Children were aged 18 months to 16 years, with more than 90% under the age of eight. This aligns with our earlier research showing that the average age of diagnosis in public settings is 6.6 years.

From a practical perspective, our biggest concern about the profound autism category is the age threshold of eight years. Because most children are already assessed before age eight, introducing this category into assessment services would mean many families would need repeat assessments, placing additional strain on already stretched developmental services.

Talk with clinicians about supports for yourself as well, including respite care or family support groups

Second, modifications will be needed if this criteria is going to be used to inform funding decisions as it didn’t map perfectly on to level 3 support criteria.

On balance, however, our results suggest the profound autism category may provide a clear, measurable way to describe the needs of autistic people with the highest support requirements.

Every autistic child has individual strengths and needs. The term “profound autism” would need to be promoted with inclusive and supportive language, so as to not replace or diminish individual needs, but to help clinicians tailor supports and obtain additional resources when needed.

Including the category in future clinical guidelines, such as the national guideline for the assessment and diagnosis of autism , could help ensure governments, disability services and clinicians plan and deliver supports.

What can you do in the meantime?

If you’re concerned your child requires substantial support, here are some practical steps you can take to ensure their needs are recognised and addressed:

Explain your concerns

What is autism? How the term become too broad to have meaning any 

Not all clinicians have experience working with children with high support needs. Be as clear as possible about behaviours that affect your child’s safety or daily life, including self-injury, aggression or attempts to run away. These details, while difficult to share, help give a clearer picture of your child’s support needs.

It can also be a challenge to find and access clinicians with appropriate expertise. Another potential benefit of having a defined category is that it can better help families navigate care.

Ask about support for the whole family

Our studies show that many caregivers  want more support for themselves but don’t always ask. Talk with clinicians about supports for yourself as well, including respite care or family support groups.

Reach out

Coming together with other carers and families can reduce your own isolation and normalise many of the unique challenges you face. Connecting with like-minded people can provide a supportive, empathetic and empowering community.

Plan for safety

For children with high support needs, prioritise safety planning with your child’s care team. This can include strategies to reduce risks, as well as planning how best to support your child’s interactions with health, education and disability services.

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New guidelines for coronavirus mild-symptom patients at home

The Union Health Ministry has come up with guidelines for home isolation of people who either have very mild coronavirus symptoms or are in the pre-symptomatic phase. At present in India all suspected cases are quarantined in a hospital setting.

“As per existing guidelines, during the containment phase, the patients should be clinically assigned as very mild/mild, moderate or severe and accordingly admitted to COVID Care Centre, Dedicated COVID Health Centre or Dedicated COVID Hospital, respectively," the ministry said in its new guidelines.

“However, very mild/pre-symptomatic patients having the requisite facility at his/her residence for self-isolation will have the option for home isolation," it said.

Who is eligible for home isolation?

1) The person should be clinically assigned as a "very mild case/ pre-symptomatic" case by a doctor.

2) Such cases should have the requisite facilities at their residence for self-isolation and also for quarantining their family contacts.

3) A caregiver should be available 24x7 to care for the patient. A communication link between the caregiver and hospital is a pre-requisite for the entire duration of home isolation.

4)The caregiver and all close contacts of such cases should take hydroxychloroquine prophylaxis as per protocol and as prescribed by the treating medical officer.

5) Download government's Arogya Setu app on mobile phones. The app should stay active at all times through bluetooth and Wi-Fi.

6)The patient should agree to monitor his or her health and regularly give an update on their health status to the District Surveillance Officer for further follow-up by the surveillance teams.

7) The patient has to fill in an undertaking on self-isolation and must follow home quarantine guidelines.

When should patient seek medical attention?
-Difficulty in breathing

-Persistent pain/pressure in the chest

-Mental confusion or inability to arouse

-Developing bluish discolorations of lips/face
-As advised by treating medical officer

When to discontinue home isolation?

Patients under home isolation can end home isolation if their symptoms are clinically resolved and the surveillance medical officer certifies him or her to be free of infection after laboratory testing.

Meanwhile, the total number of coronavirus cases in India increased to 29,435. The death toll went up to 934, according to the data released by the Union Health Ministry. India is under an extended lockdown till 3 May to mitigate the transmission of the novel virus.

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New tool helps predict mortality risk in dementia patients

Researchers have developed a A new tool that predicts risk of death and admission to a long-term care facility for patients with dementia may help conversations between health care providers, patients and their families. The research has been published in the CMAJ - Canadian Medical Association Journal.

The recent tragic outbreaks of COVID-19 in long-term care homes highlight the need to have care discussions with residents and their caregivers.

"The majority of residents in long-term care homes have been diagnosed with dementia. Our study shows that the survival of many people with dementia is poor. It may be that many would choose care that focuses on comfort care and quality of life should they become acutely ill," says Dr. Peter Tanuseputro, a family physician and researcher with the Bruyère Research Institute, the Ottawa Hospital Research Institute and ICES, Ottawa, Ontario.

 

We have developed a tool that asks simple questions about a person at the time of dementia diagnosis and translates it to the chance of dying and of entering a nursing home over the next 5 years. This information can be used in conversations about what to expect," says Dr. Tanuseputro. "For newly diagnosed dementia patients and their families, personalized information about their trajectory may be helpful to plan for the future, including advance care planning and planning for additional supports."

The study used linked data from ICES on more than 108 000 people living in the community in Ontario who were newly diagnosed with dementia from 2010 through 2012.

 Researchers found that more than half of individuals (55%) died within 5 years -- comparable to many cancers -- and almost half of those who died (28%) lived in institutions. Only 1 in 4 people were still alive and living in the community 5 years after diagnosis.

Older age, male sex and presence of chronic obstructive pulmonary disease (COPD), congestive heart failure and kidney failure at the time of diagnosis of dementia were the most important factors that predicted death and admission to long-term care. The impact of organ failure on prognosis in people with dementia has not been well documented in other studies.  

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Caregivers of children with eczema suffer mild anxiety, depression

Mild anxiety and depression have been found in parents or caregivers surrounding children with atopic dermatitis, the most common form of eczema.

In the study, researchers assessed the impact of an atopic dermatitis diagnosis on the families of 35 children aged 1-6.

They evaluated 83 family members and caregivers and found that all respondents reported at least mild severe anxiety with some showing moderate severity anxiety.

Almost 3 in 4 ( 74%) participants were also found to present with depression.

The study found that depression and anxiety were associated with the persistence and longevity of atopic dermatitis. Researchers did not find an association between scores and the severity of the disease, meaning that depression or anxiety was not observed to increase where atopic dermatitis was more severe.

Atopic dermatitis (AD), the most common form of eczema causes the skin to become itchy, red dry and cracked. It is a chronic condition that most often occurs in people who have allergies and can develop alongside asthma and hayfever.

As well as the symptoms of AD, patients with the condition are also known to suffer from insomnia, anxiety and psychological stress, linked to the physical manifestation of their eczema.

The study utilised the Hamilton Depression Rating Scale ( HDRS) and Hamilton Anxiety Rating scale (HAM-A), one of the first and most widely used ratings systems for identifying the two conditions in both a clinical and research setting.

To supplement the ratings questionnaires, the team also asked participants what their greatest concerns were. The most frequent worry reported was the information families and caregivers receive about the nature of the disease itself, since AD is a long-term condition which requires complex and costly medical treatments.

Lead researcher opined, the chronicity and complexity of chronic dermatitis often leads to overlooked anxiety and depression in family members and caregivers, but our results show the extent of this cannot be overstated.


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