Getting an autism diagnosis can be challenging, especially for minorities and girls, who tend to be diagnosed later in life. The average age of diagnosis is around 4 years old, but some people do not get diagnosed until adolescence or even adulthood. There are several reasons why diagnosis can be delayed:
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Lack of awareness among parents, doctors, and educators about signs of autism in young children. Symptoms like lack of eye contact or delayed speech may be overlooked.
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Gender bias in diagnosing autism presents differently in girls. Symptoms in girls tend to be more subtle.
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Racial disparities in access to developmental screening and autism evaluations. Minority children are diagnosed 1.5-2 years later than white children.
-Regional differences in availability of diagnostic services, leading to long wait times. In some areas, it can take 6 months to a year to get an autism evaluation.
- Financial barriers to accessing specialized diagnostic testing, which may not be fully covered by insurance. Completing the evaluations can cost thousands of dollars out-of-pocket.
Getting an accurate, timely autism diagnosis is crucial to accessing early intervention services and appropriate support in school. However many families face delays and difficulties navigating the diagnostic process. Increased awareness and improved access are needed so all children can get the help they need as soon as possible.
Education Rights
One of the most important rights for individuals with autism is ensuring access to appropriate education services. Two key laws help protect these rights – the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act.
Overview of IDEA
The Individuals with Disabilities Education Act (IDEA) is a federal law that guarantees students with disabilities access to a free appropriate public education (FAPE). To qualify for services under IDEA, a student must be diagnosed with one or more of 13 qualifying conditions, including autism spectrum disorder. IDEA mandates that public schools create an Individualized Education Program (IEP) for each child to ensure their unique needs are met.
Some key components of IDEA include:
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Requiring public schools to locate, identify, and evaluate children with disabilities for no cost to families. This is known as Child Find.
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Providing access to early intervention services for children under 3 through the Early Intervention Program.
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Requiring that IEP programs be designed to enable students to be educated in the least restrictive environment. This means ensuring students are educated alongside peers without disabilities to the greatest extent possible.
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Guaranteeing access to transition services to help students successfully move from school to post-secondary education or employment.
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Providing access to assistive technology devices if required for a student to access FAPE.
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Requiring that parents/guardians be equal participants in the IEP process.
IEPs
An IEP outlines the special education programming and support a student will receive. It is developed by a team that includes school administrators, teachers, therapists, school psychologists, parents/guardians, and whenever appropriate, the student.
Key components of the IEP include:
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The student’s present levels of academic and functional performance
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Annual goals for the student
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The special education services, related services, and supplementary aids to be provided
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Details on how progress towards goals will be measured and reported
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Accommodations and modifications to support the student in the general education classroom
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Transition planning for post-secondary goals starting by age 16
IEPs must be reviewed annually and can be revised if needs change. Every three years, the student must be reevaluated to determine if they continue to qualify for services.
504 Plans
Unlike IDEA which provides individualized special education services, Section 504 focuses on removing barriers and providing accommodations so students can access education comparable to their non-disabled peers. To qualify for a 504 plan, a student must have a physical or mental impairment that substantially limits one or more major life activities.
504 plans can include accommodations like:
- Extended time on assignments and tests
- Reduced distractions for testing
- Audio textbooks
- Use of assistive technology
- Modified attendance policies
- Adjusted seating arrangements
The 504 plan outlines the specific accommodations, who will provide them, and where they will be provided. 504 plans are typically reviewed annually.
Right to FAPE
At the core of special education laws is the right to FAPE – a free appropriate public education. This means special education services are provided at public expense and meet standards set by the state for all students. Specific FAPE requirements can vary slightly by state.
Ensuring students with autism access FAPE allows them to reach their full potential. Understanding these education rights is critical for parents and advocates.
Bullying
Bullying is unfortunately common for children and adults with autism. Studies have found that children with disabilities like autism are 2 to 3 times more likely to be bullied than their nondisabled peers. One study found that over 60% of children with autism reported being bullied at school.
Bullying can take many forms including physical, verbal, relational, and cyberbullying. Some common examples for individuals with autism include:
- Being called offensive names related to autism
- Being purposely excluded from group activities
- Having belongings stolen or hidden
- Being threatened or subject to physical abuse
- Receiving offensive texts, messages, or posts online
If your child is being bullied at school, there are legal protections in place. Under the Individuals with Disabilities Education Act (IDEA), schools must provide a safe learning environment free from bullying and harassment. If the school does not take adequate steps to prevent bullying, parents can file a complaint or sue the school district.
The Department of Education’s Office for Civil Rights also protects students with disabilities from discrimination and harassment at school. Discrimination complaints can be filed under Section 504 of the Rehabilitation Act or the Americans with Disabilities Act.
Parents need to document all incidents of bullying and work with the school to implement an anti-bullying program. Switching schools or classes may be an option if the bullying is severe. Outside of school, parents can contact the police or pursue legal action if the bullying rises to the level of harassment or assault. With proper support and advocacy, children and adults with autism have a right to an educational and living environment free from fear.
Employment
Finding and maintaining employment can be challenging for individuals with autism. There are important protections and accommodations under the law that aim to prevent workplace discrimination and support those with autism in the workforce.
The Americans with Disabilities Act (ADA) prohibits discrimination in employment against qualified individuals with disabilities. This includes prohibiting discriminatory hiring practices, firing, compensation, job training, and other terms and conditions of employment. Employers are required to provide reasonable accommodations in the workplace for individuals with disabilities unless doing so would impose an undue hardship on the employer.
Some examples of reasonable accommodations for autistic employees include:
- Flexible work hours or telework options
- Providing written job instructions
- Dividing large assignments into smaller tasks
- Allowing the use of headphones or earplugs to minimize distractions
- Providing quiet workspace or reducing noise distractions
- Adjusting supervisory methods like providing more frequent feedback
Accommodations are determined on a case-by-case basis through an interactive process between the employer and the employee. Employees are advised to work with their employer, provide medical documentation if needed, and suggest potential accommodations that may help them succeed in their specific job.
There are also federal programs that provide services to help those with disabilities obtain and maintain employment. Vocational Rehabilitation (VR) programs offer services like job training, resume development, and job placement. Ticket to Work connects beneficiaries with support services and career development tools.
Finding an employer and workplace that embraces inclusivity and provides needed accommodations is key for autistic individuals to thrive in their careers. Understanding available protections and programs can help ensure equal employment rights.
Housing Accommodations for Individuals with Autism
The Fair Housing Act (FHA) protects people with disabilities from discrimination when seeking housing. Under the FHA, landlords are required to provide reasonable accommodations to tenants with disabilities if the accommodations are necessary to allow the person equal opportunity to use and enjoy their dwelling.
Individuals with autism may require certain accommodations related to their disability, such as:
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Allowing an emotional support animal even if the housing has a “no pets” policy. Proper documentation from a medical professional will need to be provided.
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Installing visual aids like picture boards, timers, or labels to help with communication, scheduling, and transitions.
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Allowing rent payment in multiple smaller increments if paying the full amount at one time is overwhelming.
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Waiving fees for late rent payments that are a direct result of the tenant’s disability.
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Granting a reserved parking spot near the entry to accommodate difficulties with walking distances or proximity to other cars.
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Allowing a reasonable modification to the dwelling, like installing grab bars in the bathroom, replacing door knobs with levers, or putting in a ramp.
Tenants are responsible for paying the costs associated with modifications, but landlords should allow them at no extra charge. Reasonable accommodations that do not pose an undue financial or administrative burden must be granted.
If a housing provider illegally denies a reasonable accommodation request, the person with autism has grounds to file a complaint with the U.S. Department of Housing and Urban Development (HUD) or local fair housing agency. Getting help from a legal advocate or housing attorney is advisable.
Financial Planning
Financial planning for individuals with autism requires special consideration due to eligibility requirements for government benefits programs and the need to protect assets and provide for future care. Three important tools to be aware of are special needs trusts, ABLE accounts, and Medicaid planning.
Special Needs Trusts
A special needs trust allows families to provide for a loved one with disabilities without affecting their eligibility for means-tested government benefits like Supplemental Security Income (SSI) and Medicaid. Assets held in the trust are not considered countable assets for benefit eligibility purposes. There are two main types – first-party and third-party special needs trusts.
ABLE Accounts
ABLE accounts are tax-advantaged savings accounts available to individuals with disabilities. Earnings are not subject to federal income tax if spent on qualified disability expenses. The first $100,000 in the account is excluded from the SSI resource limit. Balances over $100,000 could impact SSI but not Medicaid eligibility.
Medicaid Planning
Medicaid planning refers to strategies used to protect assets if long-term care is needed while still qualifying for Medicaid coverage. This can involve special needs trusts, gifting assets, and purchasing exempt assets like home improvements or a new home. Professional legal advice is recommended to ensure eligibility.
Proper financial and estate planning is crucial for individuals with disabilities. Consulting with attorneys familiar with special needs planning is advised to take full advantage of available options.
Guardianship
Guardianship is a legal process in which a judge appoints a guardian to make decisions on behalf of an individual deemed incapacitated. While sometimes necessary, guardianship can be very restrictive for the incapacitated person. Alternatives that respect the individual’s autonomy as much as possible are usually preferable.
One such alternative is supported decision-making. This allows the individual to make their own choices with support from a team of trusted advisors. The advisors explain options, break down complex decisions, and help communicate decisions. However, the individual remains the ultimate decision-maker.
Supported decision-making respects self-determination and provides just enough support to allow the individual to make their own choices. It should be considered before pursuing full guardianship. Some steps to take:
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Assemble a team. Identify people the individual already trusts to provide support.
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Have capacity assessed? Get an evaluation from professionals on abilities.
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Formalize arrangements. Draw up agreements outlining support roles.
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Accommodate communication. Aid communication in whatever way works best.
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Adjust over time. Assess changing needs and adjust support.
Supported decision-making preserves autonomy while providing needed assistance. For many, it strikes the right balance between safety and independence. It empowers the individual to direct their own life.
Criminal Justice
Individuals with autism are vulnerable in the criminal justice system. Autism impairs social skills, which can impact how someone behaves during interactions with police officers. Difficulties with communication also make it harder to understand rights and follow instructions. Sensory sensitivities may lead to overwhelming stress during arrest or detention. These and other autistic traits increase the risk of misunderstandings that jeopardize the legal rights and safety of autistic people.
Law enforcement policies and training practices often fail to accommodate the needs of people with disabilities. Many jurisdictions lack protocols to identify disabilities and provide appropriate support. Without proper training, officers may misinterpret autism behaviors as suspicious or uncooperative.
Once in the system, communication barriers put autistic defendants at a disadvantage. Standard court procedures are not designed for neurodiverse minds. The fast pace of court hearings and interrogations can overwhelm. Literal thinking makes grasping terms like “plea bargain” more difficult. Autistic people struggle to collaborate with their legal counsel and follow court decorum. All this impedes their ability to participate fully in their defense.
Advocates recommend disability awareness training for all who interact with the justice system, from police to judges. Pre-arrest diversion programs can direct individuals to special support services rather than jail. Providing accommodations for a disability during legal proceedings is essential. With greater understanding and inclusion, the criminal justice system can better serve the autism community.
Advocacy Resources
There are many organizations and advocacy groups dedicated to protecting the rights of individuals with autism and providing support services. Some key resources include:
Organizations
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Autism Society of America: This leading advocacy organization provides information, education, advice, and support for individuals on the autism spectrum. They have a nationwide network of affiliates that can connect families to local resources.
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Autism Speaks: This major autism science and advocacy organization funds research into causes and treatments. They advocate for public policy changes and work to improve access to care.
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The Arc: The Arc advocates for the human rights of people with intellectual and developmental disabilities, including autism. They work on the national and local levels for policy reform.
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Association of University Centers on Disabilities (AUCD): This organization supports a network of interdisciplinary centers advancing policy and practice for those with developmental disabilities.
Advocacy Groups
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Autistic Self Advocacy Network (ASAN): This nonprofit led by autistic individuals promotes self-determination, independence, and civil rights for those on the spectrum.
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Autism National Committee (AUTCOM): This group advocates for the human rights of autistic citizens, emphasizing “neurodiversity” and advocating against unethical treatments.
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National Autism Association (NAA): This nonprofit aims to respond to the needs of the autism community and educate families on autism-related safety issues.
Laws Supporting Rights
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Individuals with Disabilities Education Act (IDEA): This federal law guarantees students with disabilities, including autism, access to free education and services.
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Americans with Disabilities Act (ADA): The ADA prohibits discrimination based on disability and requires reasonable accommodations.
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Autism CARES Act: This legislation authorizes federal autism programs for research, surveillance, early detection, and support.
