My Child Just Received A Diagnosis of Developmental Delay-What Do I Need to Know? How Should I Feel?
No “should’s” here. You just want someone to GET it.
The truth is- having a child with autism can be a very different experience for different families, depending on many factors (e.g., socio-economic status, ethnicity, geographic location, family structure, “severity” of delays, etc.). That being said- there is absolutely NO RIGHT OR WRONG way to feel at any point during the course of parenthood (and beyond). Part of the intention behind this community is to listen to and support one another without judgment and really try to take in and understand other people’s experiences, perspectives, fears, success, feeling and values. Having a neurodivergent child can bring so many unexpected joys, bring life into perspective, allow you to see the world through their eyes, connect you with another amazing families, and feel gratefulness for many “not so tiny” moments.
However, I do feel it is important to discuss the emotional toll for those who parent a child with autism or other neurodivergent needs. Now, I certainly don’t want this to sound like a negative experience, because I know all parents find happiness and joy with their children regardless of their strengths and challenges; however, there are some real significant hurdles, responsibilities, and challenges that parents of children with differing needs face, that most parents of neurotypical children do not and parents should absolutely feel validated and supported on their journey. Medical, financial, emotional, legal, practical, and mental health struggles are often increased and qualitatively different. Raising a child with significant delays can cost at least twice as much as a raising a typically developing child. Many decisions are more complicated and it hard to find trusted advice or others in a comparable situation who you can bounce ideas off of or find validation from.So let’s discuss.
Many children with autism or other similar delays experience significant medical needs and/or health concerns, ranging from GERD to PANS to vision impairments to epilepsy, as well as mental health/behavior therapies and difficulties. often requiring frequent doctors visits and high medical costs. Per the research, children with autism experience a higher number of healthcare office visits and prescription drug usage than neurotypical peers Moreover, some children experience difficulty with feeding child/sustaining their weight, sometimes as a result of extreme sensory sensitivities or because they may require G-tube to eat. Often times, these families struggle with a lack of clear prognosis, especially with co-occurring medical conditions (CP, genetic disorders). Additionally, many families experience long waits for specialists and receive differing labels and diagnoses from different providers, making things even more confusing and sometimes resulting in a lack of trust in providers, not to mention coordinating and attending the chaos of different therapies.
How about financial and legal struggles? Well, if you look at the numbers, raising a child with ASD can cost at least twice as much as a raising a typically developing child. In fact, 58% of special needs parents were affected in terms of career decisions a opposed to 9% of typically developing after children. Many parents, especially single-parents, are unable to work at all, further exacerbating their financial situation. Many families are having to manage government/state benefits in addition to public and private insurance. There is also the consideration of planning for long-term care, legal need, advanced directive, special needs trust, guardianship etc. as adults with a disability on average require 28% more income to support medical needs. Per the research, a large majority of stress comes from financial burden, accessing childcare, services at school, concerns about the future needs of child.
And what about school? Per the research, 1/3 of parents stated their children had to change schools due to lack of support. Parents then to receive more calls/notes/expulsions/suspensions from school/camp/sports than neurotypical peers. Per parents, less than half of ASD students received necessary adjustments to their curriculum, assessments, accessible environments, and regular communication/meetings as well as reduced support to their mental well-being and lack of professional development for teachers sometimes resulting in difficulty with school placement and constant fighting for support/services. On rare occasions, significant physical and emotional harm were reported in the school setting. Additionally, some parents have to make the hard decision of whether to enroll their child in extra schooling and therapies over their summer break vs. socialization, camp, or breaks because of fears of burnout and frustration.
Now let’s discuss the most important area that tends to be affected: emotions and psychological well-being. Not surprisingly, there are many emotional reactions, all valid, to a child’s diagnosis of autism. For some, they experience difficulty accepting differences in child and/or diagnoses, feelings of blame and shame, guilt, resentment (perhaps because of amount of time required to supervise child, children who can be aggressive and have self-harm behaviors, or giving up their own dreams/goals), anxiety, and anger (perhaps because of having to let go of the fantasy of what they envisioned for their family). Many parents experience sadness and frustration because of wanting to manage their child’s anxiety, but unable lack of friendships for child, and feeling frustrated because of lack of bonding and common interests. Parents also struggle to understand their child’s need and wants secondary to lack of verbal communication, which increases everyone’s anxiety Many experience fear of harm or death to child as a result of the child’s lack of safety awareness (e.g., drowning, elopements) or because of corporal punishment by teachers, police officers, or others. Also, Continued grief at different stages of the child’s life in terms of struggles and potential missed opportunities or burden on parents.
Per the research, there was a significant increase in depression in parents after receiving autism diagnosis for their child (73%) and overall increased rates of depression, anxiety and reduced quality of life, which in turn can also effect behavioral and QOL of child, reinforcing cycle, resulting in a significant lack of self-care (sleep, socialization, nutrition), mental health care. Increased burnout from continuous caregiving and constantly adapting the home environment for emotional and physical safety. They tend to experience less satisfaction from their own parenting as well as reduced self-esteem as well as hopelessness and despair. Parental burnout can lead to insomnia, weakness, distrust, apathy, anger, cynicism, irritability, and isolation etc. as well as higher cortisol levels. Interestingly, parents often under-report and under-estimate their levels of stress and emotional impact and parents of children with “special needs” only felt hope while parenting as opposed to joy, hope, gratefulness, and pride in parents of children without “special needs”, they also have worse health status, this is all moderated by perceived societal support.
And what about a social life and all your other relationships? Many parents refrain from going to social events or out in public in general because of embarrassment from child’s tantrums because of a lack of understanding from other parents, pity from others, stigmas. There may be family members who feel you’re doing something wrong or think they can “fix” it based on their perceived knowledge or culture. As such, many parents experience difficulty socializing and/or going out in public in addition to loss of friendships/family support because of lack of availability or lack of emotional support. The relationship between parents can be affected significantly, secondary to stress, disagreements about how to help their child, and potential blame. In fact, marital discord due to disagreements on how to handle care of the children, marital satisfaction was most helpful for father’s well being, higher levels of conflict and divorce. It can also be a challenge to meet other siblings needs, leading to sibling rivalry. Additionally, siblings may be teased or unintentionally parentified.
It is important to note that many of the challenges, barriers, and burdens carried by parents of children with autism are often exacerbated for parents of children on color and/or those falling within the lower SES category. So what hope is there really? Of course much of this is going to overlap and some of this “advice” may sound unreasonable and overly simplistic. I understand this and respect this and I certainly will not take offense if you feel, “Oh I only wish it were that easy”, “You definitely don’t get it”, or “That’s not even realistic but okay.” But I encourage you to at least hear me out and consider anything that may feel doable or realistic for you.
In terms, of emotional support, some of the most important things you can do are to allow yourself to feel feelings, lower your expectations fro your child in short-term but increase possibility and home on the child’s own timeline, expect significant highs and lows over the course of your family’s journey, and lower expectations for yourself as a parent. Additionally it is crucial that you give yourself grace and patience, pick and choose battles both with your children and your partner, make several back-up plans for any outing or situation, allow grieving and moving on from what “could have been”, accept child for who they are, appreciate their strengths and uniqueness, don’t feel forced to pretend its easy, celebrate every milestone, find humor in the differences, and try not to take on “special needs” or “autism parent” as your only identity.
For some, there is both distraction and empowerment in helping and advocating for others. Additionally, solution-focused approaches have been shown to be most beneficial-The greater the Childs autonomy, the greater the parents QOL generally. However and whenever you are able, try to find healthy coping strategies that are manageable (anything from watching reality TV, going for a walk, sleeping, venting to others, enjoying an adult beverage), try to find time for basic self-care, find hope and joy in any way you can, Start with baby steps in terms of self care (shower, hair cut, walk etc.) The research has shown that the increased amount of self-care can result in increased self-compassion, emotional intelligence, parental skills, stress reduction, mindfulness, increased energy, increased task efficiency, and positive thinking. Finally, trust experts in their realms but also trust yourself as your child’s experts.
Social support has been shown to be extremely imperative for parents. If possible, align yourself with family and friends who can provide unconditional support, connect with new friends who understand and/or support your journey, avoid those parents that are filled with “doom and gloom”, ask for help, share with others, don’t hide struggles attend support groups (virtual or in-person), let go of what others may think, be direct and honest with others about your experiences, try to be as much on the same page as your partner and find compassion for each other, when possible, take turns with other parent or family member and use respite services, encourage other peers and adults to ask questions. Try not to take advice from people who aren’t professionals or haven’t lived it and do your best to understand people’s views of care/solutions in different cultures, but trust yourself as the parents. Finding support and acceptance within your religion,Consider couples/family therapy, and psychoeducation, and check-in with other siblings and try to make special time for them and their needs. Per the research, social support and positive reappraisal are associated with increased quality of life. positive relationship between parents were significantly associated with lack of emotional stress on parents and children, and family and community cohesion and meaning/purpose are big protective factors.
Finally, in terms of more practical support, advocates and lawyers can be extremely helpful in terms of navigating the school environment as well as planning for future care and financial support for your child. It is well-documented that certain therapies can lead to significant progress and independence, especially when initiated early in the child’s life, including: occupational therapy, physical therapy, speech-language therapy, animal-assisted therapy, or psychotherapy. Additionally, other options depending on case and family comfort level include applied behavior analysis (ABA), augmentative and alternative communication (AAC) devices, emotional service animal, neuropsychological assessment, and social skills groups. Do your best to find understanding and patient doctors, research and apply for financial aid/support. Try to find Telehealth options if cannot get childcare or access services in person. Work with other professionals as a team, Participate in your child’s school community/septa/social events. There are advocacy groups such as the Yellow Ladybugs (All Brains Are Different teacher guide) and I CAN Network resources on supporting neurodivergent students and the Rooted in Rights community has supports for parents of children with special needs. Don’t be afraid to do your own research, ask endless questions, participate in creating what doesn’t exist, and don’t ever give up.