13 Necessary Next Steps for Parents After an Autism Diagnosis

According to the Centers for Disease Prevention and Control (CDC), about 1 in 68 children has been identified as being autistic, with boys being approximately 4.5 times more likely to be diagnosed than girls. The latter detail is still being debated, as autism diagnosis criteria were developed primarily with data from boys, autism presents differently in girls, and girls may be better at masking their difficulties in order to fit in with their peers; all of which may mean that the occurrence of autism is even higher.

The increased diagnosis of autism means that many families are struggling to understand and come to terms with what this means for their child and their child’s future. The Thinking Person’s Guide to Autism published an article earlier this year on 13 next steps for parents after and autism diagnosis. They are:

  1. Give yourself time to adjust.
  2. Give the people around you time to adjust, and keep them in the loop.
  3. Give yourself time to process information critically.
  4. Give yourself time to learn which organizations and people to trust.
  5. Give yourself time to figure out what autism means for your child.
  6. Give yourself time to figure out what communication looks like for your child.
  7. Give yourself time to figure out which supports, schools, therapies, and environments will help your child succeed.
  8. Give yourself the space to be flexible about needs, and pick your battles.
  9. Give yourself time to find autistic role models for your child.
  10. Give yourself time to think about shared traits.
  11. Give your child space to grow and change.
  12. Give yourself time to figure out what your child really enjoys.
  13. Give yourself time to plan for your child’s future without you.

An autism diagnosis can be a relief that the challenges you and your child have been facing have an explanation. It can also bring worry and concern for your child’s future. Be sure to read the full article for details and resources linked to each of the above points. There is a growing community of autistic teenagers and adults online sharing their experiences and speaking up for others on the spectrum that can also help a family understand what an autism diagnosis means (see the #ActuallyAutistic hashtag on Twitter).

Aligning National PTA and Illinois PTA Legislative Priorities: Special Education

The National PTA Legislative Checklist calls for the reauthorization of the Individuals with Disabilities Act (IDEA) that further supports and improves the lives of more than 6.5 million eligible children, from infants through youth. Reauthorization must:

  • Include a statutory definition of family engagement in education based on National Standards for Family-School Partnerships within section 602 of IDEA.
  • Provide greater protections for the rights of children with special needs, as well as their families, to ensure access to resources and supports for high-quality education.
  • Require transition planning for qualifying students to begin no later than age 14, incentivizing school districts to employ appropriate staff to deliver services.
  • Support the inclusion of behavioral intervention plans in a student’s IEP and 504b plan.

One of the fundamentals of IDEA is the inclusion of Procedural Safeguards designed to enumerate the rights of both the student and family, and the school district when determining appropriate educational programs for students with special needs. These safeguards include, but are not limited to:

  • The parents’ right to receive a complete explanation of all the procedural safeguards, the method of submitting any complaints, and the mechanism for resolving disputes,
  • The right to confidentiality
  • The right to review in its entirety a student’s educational record
  • The right to participate in meetings to identify, evaluate, or place a student in a particular educational program, including the provisions of a free appropriate education for the student (FAPE)
  • The right to obtain an independent educational evaluation
  • The right to prior written notice on matters relating to the student
  • The right to give or deny consent before the school make take certain action with regard to the student
  • The right to disagree with decisions made by the school system

The Illinois PTA recognizes that the educational environment for students with special needs, as defined within the Individuals with Disabilities Act (IDEA), must consider the needs of the student as part of the planning process. One critical element of assessing student needs continues to be funding. Item 3c of the Illinois PTA Legislation Platform calls for full funding of all mandated educational and special programs so that all students will have the opportunity to reach their full potential. This position is expanded in Item 3g of the platform which calls for adequate appropriations for the education of special needs students.

In addition, we support the development of Social and Emotional Learning Standards (SEL) which provide content, skills, evaluation, and assessment at age appropriate levels as part of the curricula crafted by Illinois State Board of Education (ISBE).

The Homework System for ADHD Kids

Homework can be challenging for kids, and not just the homework itself. Kids have to write down the assignment properly, bring home the right books and materials, keep track of due dates, and remember to hand in the completed homework—all of which can be extra challenging for anyone with poor memory, focus, or attention to detail. ADDitude, a website of resources and advice for those who have ADHD or parent a child with ADHD, created a slideshow of their 13-step homework system designed for children with ADHD or learning disabilities, though the system would help any kid who struggles with homework. Among the suggestions are:

  • Get the teachers on board
  • Set up a home routine
  • Designate a homework location
  • Use a timer
  • Take breaks and refocus
  • Have a plan for long-term assignments

If your child is struggling with any step of the homework process, whether they have ADHD or not, be sure to check out the full slideshow to help you set up a system in your house. It may take a few months to become a habit, but creating consistent routines at home and school will help both you and your child stress less about homework.

New Illinois ABLE Program Helps Families with Special Needs

ilRaising a child with special needs can be expensive. Last week, Illinois State Treasurer Michael W. Frerichs unveiled the Illinois ABLE plan to help families save for future expenses. The plan was developed by the National Achieving a Better Life Experience (ABLE) Alliance, a consortium of 13 states that worked with Congress and state legislatures to create this special investment program that allows for tax-free investment growth when savings are spent on qualifying disability-related expenses.

The plan is similar to the 529 college savings plans in that families would be allowed to set aside money for future qualified expenses, invest these funds in professionally designed savings accounts, and avoid some tax penalties on the fund. Eligible individuals can open the account for themselves, or an authorized individual can open an account on their behalf. To be eligible, a person must:

  • Be entitled to SSI or SSDI because of their disability
  • Have their disability present before age 26

Annual contributions per beneficiary are limited to the federal gift tax limit, which is currently $14,000. Like the 529 college savings plan, anyone can contribute to an ABLE plan, including relatives and friends. The Illinois ABLE plan is designed to protect an individual’s federal benefits, and up to $100,000 saved in an ABLE account would not be counted against a person’s eligibility for SSI or other federal means-tested programs. ABLE account holders are still eligible for Medicaid regardless of their account balance.

Withdrawals from an ABLE account are tax-free if used for qualified disability expenses. These are any expenses that are incurred as a result of living with a disability and that are intended to improve the beneficiary’s quality of life. They include, but are not limited to:

  • Education
  • Health and wellness
  • Housing
  • Transportation
  • Legal fees
  • Financial management
  • Employment training and support
  • Assistive technology
  • Personal support services
  • Oversight and monitoring
  • Funeral and burial expenses

The state treasurer’s office has created a fact sheet to share with families who may benefit from the Illinois ABLE plan. The Illinois ABLE website provides additional information as well as providing a fast and easy way to sign up and create an Illinois ABLE account.