Schools and service agencies that only know autism myths deny families and children needed services. During this time of year, I attend so many Individualized Education Placement meetings, and also eligibility for services meetings! And I see these same issues again and again! Too many professionals are unaware of what autism is and how it presents differently in every child.
As the saying goes: “If you know one child with autism, you know one child with autism.” Professionals need to remember that.
So you can have a daughter with an autism diagnosis; you can have a verbal child with an autism diagnosis; you can have a highly gifted, intellectual child who loves learning who has an autism diagnosis. Being female, verbal, smart, making eye contact, having friends, being extroverted and social – all of these things do not preclude an autism diagnosis.
The criteria for autism are simple: an impairment in social communication and interaction; repetitive behaviors; symptoms appear before age 3 – but may not be problematic until older; and no other diagnosis accounts for these symptoms. Simple! So why can’t more professionals get this????
Social/communicative impairments can include a child who is using vocabulary four and five years beyond their age level – these kids have very marked impairments in school and making friends! And many highly verbal children on the autism spectrum can explain their interest in steam engines for hours, but not tell you they are nigh fainting with hunger. Again, this is an impairment, and in early intervention, it is still a delay that qualifies for services. Social/communicative impairments can include very social children with many friends, yet these children become incapacitated when required to change activities or to do a new activity. Often these children also have a limited ability to identify feelings and needs, and so collapse instead. And I am also seeing happy, content, nonverbal children being denied autism diagnoses, because the clinician says happy children can’t be on the autism spectrum. But extreme delays in communication are one hallmark of autism.
Repetitive behaviors are not just the stereotyped kid rocking in a corner. The child who only recites Dr. Who television show dialogue is engaging in repetitive behavior. The child who refuses to do anything but play video games is engaging in repetitive behavior. The child who is toe-walking is engaging in repetitive behavior. Children who struggle with transitions are engaging in repetitive behavior. The child who picks lint off the carpet all day is engaging in repetitive behavior. All of those behaviors qualify as one part of an autism diagnosis.
So parents often have to educate professionals while seeking services. Yes, this is annoying. But the more you learn about autism diagnoses, the more you can advocate for your child. Learn about the many ways impairments impact children on the spectrum, and you can then more effectively get the services you need. Yup hard work. But it is worth it for your child!
WHOLE Families can help! We regularly meet with early intervention and school services to ensure that children who need autism services are getting them! We also do multiple professional workshops each year to teach others how to correctly identify and meet the needs of families impacted by autism. Need help? Call us! Know an agency or school that could use some training? Call us again. Our job is to help all families dealing with autism get needed services and family support. Let us know, and we will gladly help with your child’s needs.
Scotti and I are big fans of early intervention, and both of us love our many families in West Virginia’s early intervention program, Birth to Three. We also work extensively with families who are moving out of Birth to Three, as their children are turning three-years-old, and no longer eligible for early intervention services. When early intervention children turn three, they either transition to new programs, or they lose all services.
And that is why diagnosis matters so much in early intervention. As children turn three, and age out of early intervention services, they are only eligible for special education services if they meet certain state and federal requirements for school special education. And those school special ed programs are only available to students who meet the guidelines put into the Individuals with Disabilities Education Act (the IDEA). If your child does not have the correct, federally recognized, diagnosis, then your child could lose special education services at the age of three!
So think about that! For families who are dealing with little kiddos with special needs, the transition to special ed. seems pretty remote. After all, tantrums, speech, feeding and sleep issues, toilet issues – all of those realities of special needs parenting take over a child’s early years. So parents in early intervention are not worrying about special education down the road.
But you need to!
If early intervention specialists diagnose your child with “sensory processing disorder,” a common non-federally and non-medically recognized diagnosis, then at age three your child will not only age out of early intervention, but also lose any hope of special education placement, and any hope of insurance reimbursement for future services! Since sensory processing disorder language often hides the wide range of abilities and needs that are common to children on the autism spectrum, that unrecognized diagnosis can later cost families thousands of dollars in therapy costs, as well as confining a child to limited accommodations when the child reaches school. Not having the right diagnosis can be really damaging to families with special needs children.
So I know it is tough, but I encourage families in early intervention, whether you work with WHOLE Families or not! – to actively demand good psych evaluations for children who get labels such as “sensory processing disorder,” or non-specified “developmental delays”(not to be confused with Global Developmental Delay, which is a recognized diagnosis), or with “speech and language delays.” All of those non-recognized diagnoses can limit your future services in very significant ways.
So what should families do??
Families can request a thorough evaluation from qualified professionals who have recognized expertise evaluating children with non-specified delays in speech, motor skills, typical development, and social interaction skills at the early intervention age. In West Virginia, the qualified professionals who can do these evaluations are medical doctors and licensed psychologists. West Virginia Birth to Three has several licensed psychologists who can evaluate a child for autism spectrum disorders, and you as a parent can demand that evaluation be done. Be sure to get a copy of the evaluation, and keep a copy for when your child is old enough to transition into special education at age three.
And what if you have a child who has left Birth to Three and early intervention, is not receiving special education services, and you as a parent feel your child needs special education or recognized therapy? Get your child’s records from Birth to Three, which you are legally entitled to have, and then send a written request to your local school district, explaining your concerns, and asking for an evaluation for your child. Be sure this request is in writing, and the best process is to take the letter to your local school, ask the secretary to copy it and sign it that it has been received on the copy, and to keep the copy with you.
If the school district denies the evaluation, there are still options to appeal their decision. A great and FREE resource is the West Virginia Parent Training and Information project in Buchannon. You can call them at 1-800-281-1436, go to their website at www.wvpti.org, or see our link here at WHOLE Families. They can help you through the appeal process.
The bottom line is that early intervention and special education laws are there to help your family get all the services your child needs to have a free and appropriate, public education. Early intervention should help you get the best and most accurate diagnosis so that you can start your child on the path to successful school years – that is the point of early intervention! So speak up! Because all of us parents with children who have special needs can tell you, practice your requesting muscles now. Ask for full evaluations for children in early intervention, and be sure a qualified evaluation gives you the diagnosis that will ensure your child gets all future services.
If your child is in public school and receives special education services, then it is time to address needed accommodations and supports for the new year. Often, as children grow and become pre-teens and teens, more and more accommodations are needed while previous supports are at times less necessary. And suddenly, school begins, kids are in new classrooms, grades, even schools, with new teachers, peers, and schedules. And you needed the new accommodations yesterday!
If you think you need a new IEP and the school hasn’t suggested one, and if you have had an IEP meeting within the past 12 months, then you need to write a request to your district and ask for an update. Always put all IEP and special education requests, questions, and information in WRITING! The school must respond and the WV Department of Education’s Special Education, A Parent’s Advocacy Guide to Special Education (click on the green text to read it or download your own!), states:
“If you believe your child is not progressing satisfactorily or that there is a problem with the current IEP, you can request an IEP team meeting. The district is required to grant any reasonable request for such a meeting.”
At this update IEP meeting, ask for evidence of how your child is responding to the previously established goals, and if possible, produce evidence that your child is not progressing. (remember get it all in writing!) If you have new evaluations of your child’s special needs or disabilities, be sure to have written evidence as well. I encourage parents to have ideas ahead of time to include in this updated IEP: suggest breaks from bustle if your child is becoming overwhelmed at school, for example, or suggest a small study group format for your child who needs interaction to learn. You know your child best and so be ready to state what you want!
If schools turn down a request for an update, which they do despite the WV guidelines, then you can request a new re-evaluation of your child’s eligibility. Schools can not refuse evaluation requests. However, unless you have an outside evaluation, the same team members will do the new evaluation, so having new evidence from outside professionals is a best step. Since many WV school districts are denying autism diagnoses in their IEP evaluations, contacting us at WHOLE Families for evaluation, or contacting other reputable autism agencies for evaluations, is a good idea.
However, we have certainly worked with school districts who still deny new IEP accommodations or an IEP altogether! The schools can claim that your child’s diagnosis does not impact their education, even when they school is claiming your child has behavioral problems. When this happens, you can immediately demand a 504 plan.
504 plans have no special education placement, but they do provide accommodations to ensure that children with disabilities get a full and appropriate public education. If noise and bustle bother your child, that means they should get a 504 plan to provide quiet and calm so your child can learn. If your child struggles to write in homework assignments, classroom work, or to take notes, then requesting a laptop for notes and homework can be put into a 504 plan to ensure your child can learn. If your child gets overwhelmed at school and can’t concentrate, then a 504 plan can address the need for breaks and quiet so your child can learn. Parents don’t get to approve the 504 plan as they do an IEP, but if parents see that the 504 plan does not assist their child to full accommodation in the school, then the parent can complain. Schools can not deny children with special needs access to education.
And that is what I tell parents to think about. A 504 plan is like a wheelchair ramp for a child with a mobility disability. Schools can not build their doors in such a way that a child in a wheelchair can not get into class. Likewise, schools can not deny children with sensory or social issues in school a break or quiet space, because that is equivalent to not providing a wheelchair ramp. Breaks, quiet space, extra time, these are access accommodations. Schools by law can not deny them.
An IEP is a specialized individual education plan. It should include course modifications (allowing students to do math in their head, should they prefer, instead of writing it out as teachers ask, or reading Pokemon books for book report time instead of the teacher’s choice), homework modifications (allowing students to do more or less homework, homework on a typewriter or laptop, homework that the students choose instead of the teacher), and broad curriculum adjustments (Headsprout reading on computers instead of the traditional curriculum, or Renzulli Learning modules instead of the regular text). An IEP can include time in a special education class, time in a regular class, or both. And an IEP must include all access accommodations of a 504 plan: if your child needs a laptop in class as part of an IEP that does not mean your child also doesn’t get needed breaks.
Unfortunately, at WHOLE Families, we get asked into school special education procedures when the school district has broken down, the child isn’t doing well, and families are at their wit’s end. So we see many districts denying 504 accommodations (illegally) and refusing basic curriculum modifications. We’ve seen districts lose IEP plans and call out the police on students with 504 plans.
If you feel your district is not doing what is best for your child, then we urge you to contact help. We do independent evaluations, meet with districts, attend 504 and IEP meetings, and participate with area social services and courts. As written in previous posts, West Virginia’s treatment of special needs children is currently under investigation by the US Department of Justice for violating the rights of WV children, so now is a particularly hard time for families trying to get school support for children with special needs. So get outside help!
Unfortunately, waiting to see if a limited 504 plan or small IEP is enough for your child puts you and your child at risk. Instead of making basic and simple accommodations, too many WV schools are shipping children out of state to residential schools or sending children to juvenile detention. If you are seeing increasing hostility or blame cast onto your child, then you need to act.
A super statewide resource is the West Virginia Parent Training and Information Project (click on green text to go their website). Supported by the US Department of Education, which oversees the implementation of the Individuals with Disabilities Education Act (IDEA), which governs IEP process, the staff at WV Parent Training and Information Project can be helpful – if nothing else but to tell you that yes your district is behaving illegally. Call them at 304 -624- 1436! And…
take their online survey about your experiences with IEP and 504 plans in your district here:
Many families we meet have a lot to say about their districts! Add your voice!
And if you need support, give us a call. All children in the United States deserve a free and appropriate public education. We have helped lots of families find creative solutions that help their whole family enjoy learning and enjoy life. Childhood is a magical time. We want to help you enjoy it.
This is an issue impacting families all over the state. The United States Department of Justice recently informed Gov. Tomblin that based on their investigation of child welfare services, West Virginia is not in compliance with the Americans with Disabilities Act (ADA) or the Individuals with Disabilities Education Act (IDEA). The Department of Justice is calling on the state Department of Health and Human Resources to clean up their act, or face lawsuits.
The findings in the report will resonate with many WHOLE Families clients: (or read the full report here).
One:West Virginia relies on out of state residential placement for too many children with either mental health issues or developmental delays or both.
Two: West Virginia utilizes punitive criminal proceedings against families with special needs children and against children and teens with developmental delays and/or mental health issues.
Three: West Virginia provides no in-home or in-community services to families needing support for children with mental health diagnoses or developmental delays, and thus ships kids out of state to residential programs or incarcerates the kids.
Four: Schools in West Virginia deny Individualized Education Plans (IEP’s) for children and teens with mental health diagnoses or developmental delays, and when they do write an IEP, many districts out right refuse to implement the plan.
Five: Truancy violations stemming from limited or unavailable school supports push kids with developmental delays and mental health issues into courts and juvenile justice proceedings that are unfair and unnecessary.
IEP’s and truancy are ongoing issues for many of our WHOLE Families clients, and we are all dealing with the impact of not having school or community supports all the time. This is true for kids in Birth to Three who are transitioning to preschool and who get denies IEP’s and true for teens with multiple diagnoses not getting any services at home or school.
And as all of you know, Scotti and I race around the state trying to help families who are in court, heading to court, or struggling with no services after court. And we are always apologizing for having to change schedules and postpone home visits while we rush to court.
For those of you impacted by these issues, there is now an avenue to share your stories and ask for input into creating local and home-based programs for all of our kids. The Department of Justice copied their report findings to these two WV departments:
Director of Legislative Affairs
Office of Governor Earl Ray Tomblin
1900 Kanawha Boulevard East State Capitol
Charleston, WV 25305
Office ofthe Cabinet Secretary
West Virginia Department of Health and Human Resources One Davis Square, Suite 100 East
Charleston, WV 25301
If you want to share your stories and ideas for change, these are places to go!
If you need help, ask us! We will get out of court and be there to support your ideas as soon as we can!
Check out Sophia, a young blogger with her own site: “From Struggle Comes Strength.” She wrote an awesome post for World Autism Awareness day, discussing the autism community’s use of the words “high- functioning” and “low functioning.” Over on Facebook, the Thinking Person’s Guide to Autism re-posted the article, so check them out, too.
“Often, the way somebody functions can depend on the circumstance or situation. A student who excels academically is likely to be labelled ‘high’ functioning, but let’s say this same student struggles to speak on the phone, or has crippling sensory issues. It is probable that because of their ‘high’ functioning label, their difficulties may be underestimated or even ignored. Equally, those labelled as ‘low’ functioning may be underrated and their capabilities dismissed.”
Sophia’s point is especially important for families when struggling to get services. I have seen programs turn away individuals due to their perceived functioning level: “oh, she is too low functioning for this program,” or “he doesn’t need services, he is too high functioning.” Service providers don’t always individually assess each person with an autism diagnosis, assuming that everyone is the same. Likewise, when individuals transition to college or work settings, these labels continue to limit people as well.
Sophia writes from the point of view of someone labeled as high functioning:
“People with Autistic Spectrum Disorder, like myself, often experience overwhelming difficulties on a daily basis. The invisibility of this condition means that many do not recognise the extent of our challenges. By describing somebody as ‘high’ functioning, you are inadvertently implying that they do not require much support, or accommodations. After all, why would a seemingly ‘high’ functioning student require extra time to complete an examination?”
At WHOLE Families we work very hard to insure that people – no matter their label – get the services they need to be successful. That includes working with schools, agencies, insurance companies, and state and national programs. No label should determine the services you or your child deserves: the purpose of positive behavioral supports – for all people – is to help everyone achieve the best they can.
For college students, we have ensured test accommodations and seating arrangements; in high school we have helped students get laptops and sensory accommodations. We have helped two year olds transition into special education, and we work with pre-schools to provide stress breaks and quiet time areas within classrooms.
And WHOLE Families supports the words of people with autism, who are speaking out about what services are beneficial and what helped them.
If you are struggling to get services for you or your child due to labels about “high” or “low” functioning, we can help. If you are working with other agencies, cool, but be sure to ask for the services you need.
Sophia ended her awesome article with the best conclusion:
“Functioning labels are not necessary, instead respect the individual for who they are, and what they can do, and appreciate that ability to function may change on a daily, or even hourly basis.”
Get the services you need. Nothing more, nothing less.
ODD Diagnoses are a cover-up for bad interventions.
Across the state of West Virginia, we are working with wonderful children and teens with autism diagnoses, who, when stressed and angry, act out in intense ways.
Schools, doctors and other clinicians are labeling these children with ODD – Oppositional Defiant Disorder – instead of recognizing that these are kids on the autism spectrum, and that one defining feature of autism is struggling with communication. For the higher functioning kids and teens, this struggle can mean not knowing how to communicate in the healthiest ways when upset or in stress! (and how many of us communicate well when stressed????) Sadly, teachers, administrators, and other clinicians start punishing stressed kids and teens, making the problem worse. Stressed kids on the autism spectrum need SUPPORT, not punishment.
When your child or teen on the autism spectrum starts mouthing off, this is a sign of stress… and your child or teen needs your help (or a teacher’s help) calming down. At school, we highly recommend frequent time-out breaks for all ages: for younger students this can be time in the classroom quiet area (which you can demand your classrooms include), and for teens we recommend a quiet break to re-group reading or online in the media center (put frequent breaks into your IEP). At home, mouthiness is a sign your child or teen needs rest – a break from people and chores or homework, an earlier bed, a chance to unwind. Think about time online, time reading books, time with arts and crafts or Minecraft.
The worst thing to do with a teen or child on the spectrum who is winding up and getting more upset is to confront and challenge them! This is when things get out of hand – parents start making threats they can’t enforce; schools start threatening detention and expulsion; clinicians start suggesting meds or more restrictive environments. If you are an adult and you find yourself getting upset and angry with your kid on the spectrum, then this is a sign that things are out of hand and since you are the adult YOU NEED TO BACK OFF.
If we want our children of any age to learn to be flexible people, then we ourselves need to meet their stress with flexibility. Let your child finish a chore later; let your child unwind with a netflix video; give everyone a break from homework and come back to it – together – later. And if schools can’t be flexible, it may be time for you as parent to demand another IEP meeting.
Oppositional defiance disorder is no excuse for adults who can’t support people with autism diagnoses – whether that human is four years old or sixteen. Parents need to stand up for their children and teens, and create safe spaces so kids on the autism spectrum get the room to grow and thrive and learn just like everyone else.
Watch out of ODD diagnoses. If you need interventions, and your school or doctor is refusing to work with you, GET HELP. Find a clinician or teacher who is trained in positive behavioral supports and get an ally for you and your child. Build more family quiet time into your day, and get an IEP that supports your child. Children and teens on the autism spectrum need help learning how to communicate effectively. If they aren’t getting that help, don’t let professionals use any diagnostic label to cover up the real interventions your child needs.
We have worked with families and schools around West Virginia, helping classrooms include appropriate quiet areas and getting mandatory breaks for students, as well as helping families build stress-busting activities into their day. If you need help, please contact us; we wanna support you and your family.