What Parents Need to Do After an Autism Diagnosis

Editor’s Note: This is a guest post by a fellow Wealthy Mom MD, Dr. Monica Lee. She is a practicing OB-GYN in southern California.  She has a 7-year-old son with autism. In her spare time, she loves to go skiing and reminisce about her idealistic undergrad days at Stanford.  

Special needs families not only earn less but have much higher health care, non-health care and education costs.  This means we have to be especially careful with our money. Not to mention a severely disabled child will not be able to work and provide for him/herself in the future and will need a large nest egg to survive.  It is important to explore all resources that can help our children thrive and for parents to cope and save.

According to a 2012 Pediatrics study: On average, mothers of children with autism spectrum disorder or ASD earn 35% ($7,189) less than the mothers of children with another health limitation and 56% ($14,755) less than the mothers of children with no health limitation.

According to another 2014 Pediatrics study: After adjusting for child demographic characteristics and non–ASD-associated illnesses, ASD was associated with $3,020 (95% confidence interval [CI]: $1,017–$4,259) higher health care costs and $14,061 (95% CI: $4,390–$24,302) higher aggregate non–health care costs, including $8,610 (95% CI: $6,595–$10,421) higher school costs.

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This list is especially useful for those living in southern California but may be generalized to other states, which may have parallel programs.  

1. Get an official diagnosis from a neurologist or a psychologist.

In California, you can get a diagnosis through a psychologist at the Regional Center. They provide a lot of resources including respite care, Medi-Cal, therapy, parent training, and special discounts to Disneyland.

2. See a pediatrician and be referred to a neurologist or developmental pediatrician for a medical diagnosis or other underlying diagnoses.

You will need to obtain occupational therapy, speech therapy, applied behavioral analysis (ABA) therapy.  Not all health insurance carriers will cover these therapies, especially ABA. Call your insurance provider to ask if they do.  If they do not, switch to a plan that does.

Of note, Kaiser began covering ABA after they lost a $93 million lawsuit in 2013. They are now complaining about the costs of autism therapy so watch for changes and delays in getting therapy.  

3. See a therapist/marriage counselor/psychiatrist.

There will likely be some sort of mental fallout from the diagnosis, stress, and disbelief.  Some data suggests 80% of couples with special needs kids end in divorce. Don’t be a victim, be proactive.

4. Figure out as a team how to tell the rest of your family.

It will be difficult. You will also have to decide how public you want to make the diagnosis of autism to work colleagues, acquaintance, friends.  I feel like I made the mistake of being too open with his diagnosis and have received a lot of backlash. I felt my son was always blamed for things that were not his fault because he couldn’t defend himself.

5. Start a nest egg for all the time off, extra health care, and for your child’s future.  

Know about the ABLE act and how to save in a tax-advantaged account for people with disabilities.  

6. Go to support groups.

Meet people in the same boat and exchange tips.  Meetup.com and Facebook are good places to start.

7. Read blogs about autism.  

Here’s a list of some good ones to check out.

8. Get acquainted with what your school system has to offer kids with special needs.

Read about the Individualized Education Plan (IEP). Your child will have to undergo one every year and it will determine how s/he will be educated. Know your rights. Hire a special education attorney to make sure you get what you need.  Many special needs attorneys conduct seminars to get your business, these can be quite informative and a way to get to know the attorney.

9. Hire an advocate if you are overwhelmed with what to do.  

Here is an example of where to start.

10. Find a special needs estate planning attorney to craft a special needs trust.

Your child will likely receive state benefits in the future and you do not want any money you leave him/her to interfere with this.  

11. Apply for Medi-Cal/Medicaid.

It will come in handy for many reasons.  You may downsize your job since you are under more stress than other parents.  Then at least your child’s insurance is taken care of. Also, if you get Medi-Cal, you can then qualify for respite care and In-Home Supportive Services in California.

12. Apply for respite care or IHSS.

Speak with your regional center specialists.  Depending on your child’s abilities/needs, they will provide special funds for you to hire a babysitter to give you a break.

If your child is so severely disabled that you need to work part-time (<39 hrs) to take care of him/her, then you can apply for In-Home Supportive Services (IHSS) where the government pays you to stay home to take care of your child.

13. Take advantage of discounts available to families that have a member with disabilities.

 For example, SoCal Gas has the CARE program which gives families 20% off their bill. Kidspace museum has free sensory mornings for special needs kids.

14. Most of all take care of yourself!

Having a child with autism can be very difficult.  And unless you take care of yourself and stay mentally and physically fit, then your child will suffer.

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