Our teen has ADHD, anxiety and a new autism diagnosis. She has always struggled with school refusal but we were able to get her back on track this winter. She stayed home sick last week and then it snowballed and now she has been home for over a week. Her autism diagnosis is new and now we understand so much better why getting to school is so hard for her. The problem is that the school hasn’t put new supports in place yet that reflect this. We also need to switch therapists because her current therapist really doesn’t get the ASD part and isn’t being very helpful. We have appointments with some new therapists and the school moved the IEP meeting up but every day she stays home she gets further behind and the idea of going back gets scarier. She has a psychiatrist who is great and her medication is being well managed so at least that’s working. But without a current therapist who gets it and updated school supports, we feel really stuck and helpless. Is there anything we can do as parents to help her? We are also new to the autism world so we really don’t have the right parenting skills. Any and all advice appreciated!!
School refusal: Our teen has ADHD... - CHADD's ADHD Pare...
School refusal
First I want to say how amazing and great it is that you got this diagnosis. It’s like a key that opens up so many doors—both in terms of therapy and supports and also in terms of her self-esteem (she needs to find her people and feel empowered) and the awareness that her behaviors are not intentional, they are hard wired, and many aspects of being on the spectrum are truly a gift—attention to detail, logical, sensitive, etc.
I might be remembering wrong, but didn’t you have some difficulty with getting services going at your daughters school? Have you reached out to your state’s parent resource center yet? You may want to consider asking them if they have a list of educational advocates that you may contact for help. An advocate can really make a huge difference. Find out parent center here. parentcenterhub.org/find-yo...
There is a lot of information online about autism and school refusal. As it is a manifestation of her disability and it’s preventing her from accessing the general education curriculum, the school really has a legal obligation to create goals and provide a plan to help her. An advocate or your local autism society may have more experience than the school, however, in knowing how to accomplish this so you may want to reach out to these other sources so you know what to ask for and what her rights are.
A really excellent speaker and author you might like is Jessica Minahan. She speaks specifically about how anxiety is manifested as ‘negative’ behaviors and how important it is to get to the root cause to treat. She has a website with her published articles and her book is on Amazon.
Regarding therapists, you might want to contact your autism society for referrals. Speech therapists and occupational therapists can often offer help in social behavior and emotional regulation. Psychologists who are versed in ASD and positive parenting principles in particular can be very helpful too. There are some psychologists who practice virtually across state lines, so that may also be an option.
Thank you! We are still learning about what school refusal means in regards to her rights and what the school is responsible for - this is really helpful. And thanks for the positivity - we are happy with the diagnosis. Frustrated that no-one caught it until she was 14 because she’s been through a lot. It’s funny that you remember my previous post. Part of why we’ve been having a hard time getting the right support is because we didn’t have the right diagnosis! Really hoping this is the missing piece of the puzzle 🤞🏼
My friend’s son has just recently been diagnosed with ADHD and her son’s doctor recommended a lot of books. My son’s doctor wasn’t as good, gave us some hand out but no reading list.
The doctor recommended this guy’s approach. I went to his website and it does lol very straight forward method. My friend already has his book and says it explains it even better.
Dr Greene was on the faculty at Harvard Medical School for over 20 years, and is now founding director of the non-profit Lives in the Balance (livesinthebalance.org), which provides free, web-based resources on the CPS approach and advocates on behalf of kids with social, emotional, and behavioral challenges and their caregivers.
please tell me my about the autism diagnosis? What made you seek it out, how did you find someone to do it? What was her reaction to it all?
We didn’t seek out the diagnosis. Our kid’s issues have presented as school refusal for years and she had two neuropsych evals: one when she was 8 and the other when she was 11. The diagnosis was ADHD and anxiety. We had wondered a bit about autism but we didn’t know that it was a separate test and no-one told us. So we thought that if it hadn’t showed up on the neuropsych, she didn’t have it. There was obviously a piece missing in terms of everyone’s understanding: she had a great therapist and psychiatrist and her new school was very accommodating, but she was still very unhappy. Her last round of school refusal she did a more intensive program of therapy and one of the nurses flagged it. She was evaluated for autism this winter and has autism level 1 without cognitive or speech impairments. Basically, she’s a classic girl with autism. She doesn’t “look” or sound autistic so she just flew under the radar. We are really happy to have this diagnosis and are trying not to be mad that no-one had any clue until now.
I think you are also asking what symptoms were (or should have been) a tip off: sensory sensitivity, difficulty labeling and processing emotion, anger outbursts, emotional overwhelm that made her shut down, difficulty with change or being flexible, social/friend stuff getting harder and strong interests.
We found the psychologist by calling around and getting referrals from everyone we could think of. It took a long time but we (my husband) found someone who took our insurance.
She is still processing the diagnosis. We are very positive about it but I think it’s going to take a while. She is in 8th grade so she hates the idea of being different. We’re working on it 😊
Let me know if you have any other questions - happy to share what I know.
So happy you were able to keep moving forward with all the stress. It sounds like you are on the right track with really trying to understand ( if she can express herself about it) why the refusal? So many questions could be asked: is she not connecting with peers, is the academic level to hard, does she not feel she can deal with the pressure of school and all that it brings about? And many more questions..
I hope you can really get help from a person at her school she connects with. We sometimes have teachers and or Paraprofessional meet kids at the car and help them get the day started by walking them in. This gets harder as they older.
One of the struggles with parenting our children is when do we push them. I remember when our son was younger and he was at the top of the slide and him freaking out because he didn't want to slide... do we gently push them to experience this or do we let them give up and what is the consequence of our choice...
Big warm hugs for all the stress you are going through, know we are on your side and hope something changes for her and you guys find success.
WHEN.. you find success, please share how you did it.
Take care of yourself through this hard time.
Hello MaudQ. So sorry to hear you are going through so much.
I've got a daughter with ADHD and Anxiety that was recently diagnosed with ASD. She is 8, so younger than your daughter. It's a lot to process. And knowing what to do when school isn't working for them is very difficult.
Here are a couple of things that I found recently that were helpful. In case you are neurotypical, the book Unmasking Autism by Devon Price. Price is Autistic and covers SO much about what it is like. It's very helpful.
More recently I found this School Refusal Guidebook: pdasociety.org.uk/resources... A UK organization published this, so some of the contents may not apply if you are in the U.S. like I am. But it's a great resource. The grid on Page 14 is especially helpful. And points to another site worth looking at: innerworldwork.co.uk/?page_... (click on this page to get to the full presentation). I'm still going through these myself. But it paints a very good picture of the what and the why. And gives a variety of options of how to move forward. And while those options are slow moving, they do give hope. Hopefully you find something that you can use.
Thinking of you. Take care. ❤️🌸
Hello MaudQ. I read your post and it sounds like me 3 years ago except we are just now learning about the possibility that my 17yo daughter may also have HFA. She is formally dx’d through testing with adhd and anxiety and dx’d last year with ARFID. Most recently it has been suggested by her new psychiatrist that we are also likely dealing with HFA.
Usually if a child is diagnosed with anxiety, it seems to be the primary reason for school refusal.
I’ll share our journey in hopes that you can take away something from it
We came from one of the top public school systems in the country and they bent over backwards to try to help my daughter with her school refusal but alas, they can only help if the child accepts the help. She was pretty closed off to everything — fast pass to the nurse / not being called in in class / 1 class period in the counselor’s office / meet with a teacher in a private room one in one, etc. One thing she did accept was their home hospitalization program. They let her remain in this program (asynchronous teaching online from home) for the whole year even though it was supposed to only be temporary (60 days) just so she wouldn’t get behind while we figured out what to do for her. I appreciated them thinking outside the box. We also hired a private tutor
Prior to this we had tried exposure therapy in 8th - 9th grade at the suggestion of her psychiatrist, but it was a disaster for her because of what we see now (her undiagnosed HFA - suggested by her new psychiatrist). They were trying to get her to be more social but she isn’t social and worked in conjunction with the school to make sure she didn’t leave the building (read security officer) - sound like prison? Yeah, me too. Maybe it works for some but it was a nightmare for us and the private therapist working with the school largely ignored her natural disposition of quietness and solitude.
My sister who was a special education teacher for over 25 years stepped in at this point and told me that every time I forced my daughter into the school that she was facing actual trauma. That made me rethink everything. I realized a big public school wasn’t the right environment for her. We decided to drop the therapist and the school.
I began to research online schools in 11th grade and found one that is asynchronous and transferred her for 12th grade where she is now. The trauma is gone. She is relaxed and pulling straight A’s. I do help her maintain a routine and am involved in making sure she meets deadline targets. She will graduate with a diploma this year.
All this to say that you might have to think outside the box. I don’t know what type of high school is in your area (I know you’re in middle school but high school is upon you). Ours was a pressure cooker that regularly send kids to ivy leagues. There are so many factors.
I would first and foremost try to find out what type of trauma she is facing at school. Mine was traumatized that people were always looking at her and judging her (the hallmark of social anxiety disorder) and was always afraid of being called on in class (she wasn’t supposed to be called on according to her IEP but teachers always forgot). We all have anxiety to an extent but someone diagnosed with anxiety and on medication for this chemical imbalance experiences it at a whole different level that can be hard for the rest of us to understand.
As far as online schools, there is a plethora of choices. Many gain college credits in conjunction with completing high school credits. Big name colleges have online high schools. Very reputable. Some have live classes and some have asynchronous. There is literally something for everyone. My daughter is using the same exact curriculum that the public school had been using when they had her in their home hospitalization program.
In addition to school, I wish she were in some clubs for special interests but that is not in the cards right now. I did get her to volunteer for a while — especially in those days when I’d have to pick her up from school. Her demeanor would completely change once we were out of the school parking lot and walking into the animal shelter where we volunteered. We are talking just minutes later.
Sorry this is so long but it’s what I wish someone had shared with me when I was at the place where you are.
Find what makes her comfortable and what makes her tick and go from there. Just know that the traditional school environment isn’t the only option out there.
Not what you're looking for?
You may also like...
Separation Anxiety and School Refusal
School refusal
6 year old refusing school!! Help!!
School Refusal 11 y.o.
11 year old school refusal
18 yrs Refusing medication
School
Issues with the school
Private school placement referral 
School Options Advice
I know you feel stuck and helpless but you are just in the process of transition. Look how much has been accomplished for your daughter. Maybe you could ask her former therapist since you are waiting for new ones for recommendations to any in home supports. If they can't assist, call the social service district office you live in and ask for phone numbers to mental health or autism support services. Ask around for parental support groups for parents of autistic children or adhd. Do a deep search online for supports in your area and call around. There is alot of education out there now for autism and adhd. Once the IEP is written I don't know if they have someone to directly assist your daughter to cope with being at school or maybe someone who works in special education and focuses on 5 kids or less. Ask questions. Hang in there.
Thanks!