My Child is Autistic...Now What?

Knowing is half the battle, right? This is one crazy battle so arm yourself to the teeth with knowledge! But there is an insane amount of information out there ranging from the sublime to the ridiculous, from the anectdotal to the incomprehensible. How do you sort through it all? From my experience, you need to talk to someone already in the trenches.

Here I am! I have many years of experience navigating the education system, health care system, legal system, etc. I have also found it valuable to stay current on what is happening in the news (visit my "in the news feed" at the end of this hub). By no means do I know it all, but I've got some valuable pieces of knowledge to share. My main goal is to give you the information I wish I have to begin with, and provide a few links to my most valuable resources. I also hope to foster an exchange of information. I am never too proud to learn something new.

As you have realized by now, your Autistic child does not learn at the same rate or in the same way as other children of the same age. Your child probably socializes quite differently as well. Putting him/her in the same classroom with other children may or may not be safe. Setting the same expectations for amount of work and how the work is completed is totally unrealistic.

You will want to get your child on an Individualized Education Plan (IEP) or a 504 Plan. The IEP provides for both accomodations and modifications. A 504 Plan provides for accomodations only. A modification is where the course work is actually changed for that student to be different than his/her peers, e.g., amount, level of difficulty. An accomodation is simply a way of helping the student through educational difficulties caused by the student's disorder, e.g., read test questions aloud, allow a calculator on a test. Both the 504 Plan and IEP help protect your student with the Special Education Laws (see the section on legal issues, below).

Always ask for services in writing. Ask that comprehensive testing be done on your child. The school has to establish a present level of performance through testing and observations. Once that is established, goals can be made toward improvement in different areas, such as education and social skills.

If you know your child is Autistic, you may have already seen a healthcare professional, or you may have had an observant neighbor-in-the-know, or maybe read something in a book, magazine, or online. Regardless, you need to know how to proceed from here.

When I first discovered my son, Garrett, was Autistic, he was six years old. I missed out on early interventions that could have helped him. Many early interventions programs can be done through the education system. Developmental delays in areas such as speech and social skills are well within the scope of the education system. Contact your school district and ask (in writing!) for testing and entry into the programs they have avaiable.

Some psychiatrists and/or psychologists will also have a treatment program, but private programs can be very costly and are not always covered by insurance, as over half our states currently allow insurances to exclude autism as a covered condition. Networking is extremely valuable. Find other parents of similarly disabled children and ask what is working for them.

You will need a psychiatrist and/or psychologist or other type of therapist. Make sure you get a board-certified child psychiatrist. These healthcare professionals have undergone an additional 2 years residency specifically in the psychiatric care of children and adolescents. Young, developing bodies and brains handle medication differently than do adults, and their symptoms may manifest differently.

Doctors have typically told me that Autism is untreatable with medication. This is not entirely true. There is very little conclusive research. Additionally, there are many possible "comorbid" disorders, or disorders that occur along with the Autism, that can be treated with medications. Be persistent if you feel you need to try medications to help your child

You may also be reluctant to try medications, especially on a very young child. If behavior modifications are not working, medications can help with this. For instance, my son had a threshold of toleration he would reach before he had outbursts of violence. Medication has helped raise that threshold. Now he is able to think a little rationally a bit better so he doesn't just lash out in blind rage. Sometimes I watch him scan the room for objects to destroy, and trying to reason himself into a calmer state.

Keep records of what and how much medicine you give your child as well as when the doses are given. Keep a record of behavior, too. This will help during your regular psychiatric appointments to determine if the medicine is working. Don't trust this all to your memory. Realize that when you are having a good day with your child, you are much more likely to gloss over the bad times. Likewise, if the day you visit your psychiatrist is a good day, it will color your account to your psychiatrist as to what has been happening. Keep it accurate with written records.

Don't wait too long to try medications. If medications are going to help, try them well before the onset of puberty. I was told by one doctor that bye age 8 is just about perfect timing. I jokingly remark that all teenagers are insane. I should know because I was one! Take time to remember yourself as a teenager and remember all the rapidly changing emotions that affected your behavior. A child with mental and developmental disabilities is going to have a harder time during these years. However, if you try medications before puberty, your child can have time to feel the positive influence of the medication and be more willing to go through medication changes in puberty.

Be aware that your child's need for medication will change over the years. Certain medications may suddenly or gradually become ineffective. Your child's diagnosis may also change over time as s/he grows and develops. It is important to have a good psychiatrist to help monitor these changes and adjust medication accordingly.

Some psychiatrists also do therapy, but you may find it less expensive or necessary to have a separate therapist. Not all therapists are created equal. More education is not necessarily a mark of compatibility for your situation. Shop around and learn to ask questions prior to your appointment. If you can talk directly to the therapist, all the better. Ask if they treat children with your condition(s). Ask how long they've been in practice, how much of their case load is children, and how much of the child cases have been similar to your child's. Ask if they typically assign "homework" after sessions, or if they conduct therapy in a listening mode, with occasional observations. Ask if they do play therapy and is it with children alone, or sometimes family sessions, too. Some therapists we've seen have taken the position of advocate for the child and I feel like I'm out of the loop except for an occasional clue-in session where I'm told all the things I need to do better, without the therapist taking time to find out if I do any of these things already. Some have taken the position that I need more parenting skills and haven't talked to my child at all. Some have just listened to my frustrations and tried to boost my confidence by saying I'm doing all the right things, and just to hang in there. I figure, if I'm doing everything right, why do I feel like I need so much help? Some have been in between these extremes, and that's where I'm the most comfortable.

Keep in mind that the therapist is NOT the expert on your child, but is the expert on your child's disorder. YOU are the expert on your child - always remember that. I find that more people's perspectives on the situation is a good thing and a therapist is an expert third-party. Regular therapy can help you and your child make sense of what s/he is going through. Your child's disability isn't just his/her issue. It affects the whole family, including extended family. Make sure you don't totally exclude either yourself or your child from therapy, as it will be helpful for all.

You may even consider taking along non-disabled siblings for counseling once in a while, so they have a chance to work through how their family member's disability affects them. There are also organizations such as NAMI who hold classes and support groups for family members of mentally disabled persons.

In severe cases, inpatient care may be necessary for your child. If your child attempt or repeatedly talks about suicide or death, or seriously harms or repeatedly threatens serious harm against others, s/he meets probably meets criteria to be an inpatient. If possible, you should coordinate closely with your outpatienmental health providers to determine whether you should act to commit your child to such a facility.

Never ignore these serious signs of mental illness! Always take seriously any talk of death or serious bodily harm to self or others. It may just be a cry for help, but if it is, GIVE HELP.

Some inpatient facilities are short term, some shorter than others. I have found that private insurance allows only a few days, maybe a few weeks at most. Check your insurance policies for stated limits, and ask the hospital what the average stay is for someone on that insurance policy. The hospital complains that my insurance policy is the most restrictive and averages 3-5 days. However, have personally seen as long as a 2-week stay on that insurance. My insurance also does not cover treatment for Autism. Some states require coverage for Autism, but Utah does not. Therefore, insurance is more likely to cut him off sooner, even though he has comorbid disorders for which the need for treatment is apparent.

Other short-term inpatient facilities are designed for longers stays, up to 45 days for short-term evaluation, and still others for long-term treatment, such as the state mental hospital. I was not able to access these because of my insurance. If I had state insurance for low-income families, I would have been able to access them.

There are other ways of obtaining state insurance: become low-income, apply for a disability waiver, put child into foster care. I didn't like any of these options, but some people find them possible. You can become low-income if one parents stays home to care for the disabled child(ren), and the other doesn't make above a certain percentage of maximum state guidelines for poverty for the family size.

Disability waivers are hard to qualify for. The most common in Utah for Autism would be a Mental Retardation waiver, which generally requires below a 70 IQ. A high-functioning autistic child might require a lot of care, but will likely have an average to above-average IQ. There are other criteria for qualification, but the IQ is a big one, as are the child's ability to perform ADLs (Activities of Daily Living). In Utah, there is also a Department of Health Services waiver. I have not yet explored how to qualify for that one, as I am still in-process qualifying my son for the disability waiver. The disability waiver can pay for other services as well. I have a friend who has hers son in skilled foster care, paid for by this waiver.

As for putting your child into foster care, this can be extremely difficult. If another family member is willing to care for your child, and let you visit often, they are considered "in foster care" and the state poverty guidelines do not apply for obtaining state health insurance. If no family member is available or appropriate to care for your child, a foster family will be chosen. You will not have control over where your child is placed, only some influence, and you will be charged child support according to state guidelines for your duty of support. These services are accessed through Child and Family Services, the people who usually come to take your child away if you are abusive or negligent as a parent. However, in this case you would voluntarily give up custody.

I have personally had legal issues come up in regards to education, housing, and charges against my son in the community.

Education: In the education system, your mentally disabled child is legally entitled to Free and Appropriate Public Education (FAPE). In Utah, I learned that my children's Special Education classification earns them special protection. They cannot be suspended more than 10 school days in any school year without reviews of appropriate placement with the least restriction on them. If they are unable to stay in school in their current placements, they need to be placed in a different program with more supports in place.

My son has been moved from fulltime in a mainstream classroom, to part time in that classroom and part in the resource room, then to 3 other self-contained classrooms in succession. Our school district offers classrooms where all Special Education services are offered in a special unit, completely apart from kids who are mainstreamed. There are Applied Academics, for children who are behind their grade level, but do not have violent behavior problems. There are Emotion/Behavior Dysfunction classrooms for kids with more severe behavior problems. Some of these have a room where the child can be in a locked door seclusion, supervised closely by a staff member. There are also a few units that partner with a mental health provider. They offer medication management and regular counseling as part of the program. This is the type of program my son is in now.

Keep in mind that the school has to offer a least restrictive environment. You would not want your newly diagnosed autistic child to jump straight into the most restrictive program. If a child is doing well in the current classroom, there is no reason to change classrooms. However, if your child is repeatedly suspended for any reason, frequently excluded from certain activities because of lack of supports, you should ask for a review.

As mentioned before, always ask for reviews in writing. In my state, the school has 10 days to respond in writing. If I do not agree with their decision regarding my request, I am entitled to due process. What due process looks like in different instances depends on the situation. I was able to enlist the help of the Disability Law Center here in Utah to help me ensure my child's educational rights were protected.

Housing: Another legal issue I've dealt with is housing. I am trying to get a service animal to help with emotional issues as well as provide specific services for safety reasons and reducing problem behaviors. My landlord will not allow me to keep an animal here, which is against at least 3 laws/acts to protect the rights of the disabled. I contacted an attorney and found that it is difficult to enforce our rights when I have only a month-to-month lease. In order to protect your rights, make sure you have a lease for a specific term. Keep it current, not just month-to-month. Alternately, owning a home may be in your best interests.

Going to Court: My most troublesome legal issue is currently safety in the community. Both of my chidlren, particularly my son, have violated the rights of others, but my son has also had his rights violated. The difficulty is that my son knows right from wrong, but has extremely poor impulse control associated with his disorders. He also does not understand very well the consequences of his actions. For instance, when he is suspended from school, he thinks he's "done his time" for his assault charges. Then when we go to court, he says, "Why are we still dealing with this?"

In Utah, there is a special court for mentally ill children, called C3 (Coordination of Care Court). If you are not already in a program that closely monitors your child, it may be advantageous to apply for this court. That application must be done before the initial hearing. It is time-intensive and is not appropriate for everyone, but definitely worth checking out.

Child and Family Services: Make sure you take appropriate steps to help your child control his/her own actions. If s/he ends up in court too many times, the state may take custody. It feels too much like punishment to the parent to feel fair. It's not the parent on trial. The child has done the misdeed. Besides, then they seize a duty of parental support from you and your household crumbles under the financials burdens it can no longer withstand.

When you have a difficult child to parent, remember it is not wrong to ask for help. Child and Family Services is accustomed to dealing with negligent and abusive parents. However, parents in situations like mine with difficult children need more help. They have "wrap-around" services available to help keep families together. Research supports keeping families together vs. breaking them up at the slightest hint of problems. Ask for help keeping your family together, before it's too late.

Abuse: I also mentioned my son's righs being violated. He was in detention overnight because of the seriousness of one set of charges. During intake, he was held in a choke-hold to restrain him. He had abrasions and bruises on his neck when I went to visit him. I called Child Protective Services and then Internal Affairs opened an investigation. The thing I learned from this is that, although my son needs to have consequences, these consequences do not include abuse from other adults. He needs to feel safe, too, even if he is placed in detention. Additionally, I learned that the judges often don't like to have mentally ill children in detention. It is NOT a mental health facility. I will have more involvement in the future to advocate that he be taken to a locked-down mental health facility instead of detention.