New Idea for Autism Diagnosis Worries Families

Some people want to call severe autism 'profound autism' as a new name. This idea makes families worried about getting the right help for their children, especially those with twins who need a lot of care.
By Newsroom | Autism, Health |

The possibility of classifying "profound autism" as a distinct diagnosis is prompting discussions and anxieties among families who care for individuals with severe autism spectrum disorder (ASD). This potential shift could alter access to services and support, creating uncertainty for those currently navigating complex care needs.

As some people push to make profound autism its own diagnosis, this family is raising twins with it - 1

Background of Autism Diagnosis and Family Experiences

The nature of autism has been a subject of ongoing research and evolving understanding. Identical twins, sharing the same DNA, can present different experiences with autism, indicating that factors beyond genetics play a role.

As some people push to make profound autism its own diagnosis, this family is raising twins with it - 2

  • Varied Presentations: Even among identical twins, the expression of autism can differ significantly. This highlights that a singular genetic cause does not always lead to a uniform outcome (Article 2, Article 5, Article 6).

  • Parental Observations: Parents often note developmental differences early on, sometimes expecting delays due to various life events. Behaviors like rocking and spinning are recognized as coping mechanisms for autistic children (Article 10).

  • Twin Studies and Heritability: Research involving twins has historically pointed to a strong genetic component in autism. However, studies also show varying concordance rates between identical and fraternal twins, suggesting environmental influences are also at play (Article 7, Article 9, Article 11).

The Push for "Profound Autism" Classification

A growing movement advocates for "profound autism" to be recognized as its own diagnosis, separate from the broader autism spectrum. This distinction is primarily driven by concerns about the adequacy of current support systems for individuals with the most significant support needs.

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As some people push to make profound autism its own diagnosis, this family is raising twins with it - 3

  • Defining "Profound Autism": This term is used to describe individuals with severe autism spectrum disorder, often characterized by high support needs. In some cases, this has been officially classified as "Level 3 autism" (Article 1).

  • Concerns over Services: Proponents of this reclassification argue that current service models may not sufficiently address the profound needs of these individuals. There is a fear that without a specific diagnosis, "achievable services and supports" may be difficult to secure (Article 1).

  • Family Anxiety: For families raising twins with profound autism, the prospect of a diagnostic change brings worry about the future, particularly concerning the support their children will receive after the parents are no longer able to provide it (Article 1).

Lived Experiences of Families with Twins on the Spectrum

The journey of parenting twins with autism presents unique challenges and demands significant resilience. These families often face intense caregiving responsibilities and emotional tolls.

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As some people push to make profound autism its own diagnosis, this family is raising twins with it - 4

  • Intense Care Needs: Twins diagnosed with Level 3 autism require constant vigilance and dedicated support. Behaviors that may appear challenging, such as biting, are often part of their experience and necessitate specific management strategies (Article 1, Article 4).

  • Lifelong Supervision: Even into adulthood, individuals with profound autism may require ongoing protection and supervision. This reality shapes long-term family planning and resource allocation (Article 4).

  • Navigating Misconceptions: Families also contend with common misunderstandings about autism, such as the idea that autistic children lack empathy or do not form human connections. These misconceptions can complicate interactions and understanding (Article 10).

The Role of Genetics and Environment

The scientific community continues to investigate the complex interplay of genetic and environmental factors that contribute to autism.

  • Genetic Predisposition: Genetic research has identified various gene variants linked to autism, suggesting a significant hereditary component. However, the precise mechanisms remain a subject of study (Article 8).

  • Environmental Triggers: Emerging research explores how environmental factors, including prenatal and early postnatal influences, might interact with genetic predispositions to trigger or influence the development of autism. Epigenetic changes in risk genes are a focus of this investigation (Article 6, Article 7, Article 9).

  • The "Twin Enigma": The existence of autism discordance even in identical twins fuels the exploration of non-genetic influences. One twin's brain environment might trigger the condition, suggesting a complex interaction of factors (Article 6).

Expert Perspectives and Ongoing Research

Researchers are delving deeper into the genetic architecture of autism and its varied presentations.

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  • Gene Variant Research: Scientists are working to understand how common gene variants associated with autism might explain differences in prevalence, such as why autism appears more common in males, and why autistic women may exhibit different masking behaviors compared to autistic men (Article 8).

  • Broader Autism Phenotype: Studies examine characteristics within parents in families with multiple children diagnosed with autism, exploring potential links to the broader autism phenotype (Article 3).

  • Identical Twin Discordance: The phenomenon of identical twins with differing autism outcomes is a critical area for understanding the roles of environmental influences and gene-environment interactions (Article 6).

Conclusion: Navigating Diagnosis and Future Support

The discussion around defining "profound autism" as a distinct diagnosis reflects a pressing need to ensure adequate support for individuals with the most significant autism-related needs. Families raising children with profound autism, particularly those with twins, face unique and sustained challenges, underscoring the critical importance of accessible and appropriate services. The ongoing scientific exploration of genetic and environmental factors continues to shed light on the complexity of autism, but the immediate concern for many families lies in the practical implications of diagnostic categories on their caregiving and their children's future well-being.

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Frequently Asked Questions

Q: What is the new idea about autism?
Some people want to give a new name, 'profound autism,' to people who need the most help with autism. This is different from the usual autism diagnosis.
Q: Why are families worried?
Families worry that this new name might change how they get help and services for their children. They fear it could be harder to get the support they need.
Q: Does autism happen the same in twins?
No, even twins who are exactly the same can have different levels of autism. This shows that things other than genes also play a part in autism.
Q: What do families with twins on the autism spectrum face?
These families often need to give constant care and support. They also worry about who will care for their children when they are older.