10 Ways to Make a Difference for Your Autistic Grandchild
*adapted from an article by Jennifer Krumims*
You are a grandparent – nothing can compare with the boundless love that a grandparent feels for their grandchild. No longer limited by the need to juggle work, home, school and raising children into mature, self reliant adulthood, the gift of grandchildren is one of life’s greatest blessings. But life doesn’t always deliver its blessings in the package we expect. The diagnosis of autism is, for many, a jolt into a new world; one that many have not even heard of or at least have no knowledge.
For parents, the diagnosis tears at our hearts and brings the future crashing down (at least for a time).This is where grandparents come in. You have awaited the news of your grandchild for months, maybe years and now the gut wrenching truth is almost too painful. Your children are suffering. What could be worse?
Step one: embracing the new normal
I know you want to help because you are reading this. You want to find a way to ease the pain. Your adult children need you. You cannot cure the autism or somehow make it disappear, even though you would love to, but you play a role that is critical and you have the power to make life more manageable for your children and your grandchild or you can undermine their challenges and exacerbate an already fragile situation.
Autism cannot be cured, but time will show that it is not a “death sentence.” Life will find a “new kind of normal” and life will take on new meaning. There are therapies, education programs, and dietary considerations that will make life much more controllable for a person with autism.
Yes you can help!
1. Offer support and listen
Support your children in their efforts to come to terms with and negotiate this challenging path. Listen, affirm and avoid offering quick judgments and /or solutions. What parents need most is to be supported and to feel affirmed that they are good parents and they will be able to cope; they are not alone.
2. Accept and love your grandchild for who they are now, not what you want them to be
This can be tall order when you are in public and a full-blown meltdown is underway! Remember, this is not a child that is misbehaving; he or she needs to tell you something and is not capable of it. Loving our children means interpreting their behaviour to find the message behind it.
3. Avoid judging or blaming anyone or anything
As humans, too often we find ourselves searching for a reason or something on which we can lay blame. In the larger picture of your grandchild’s emotional, physical and intellectual growth, negative energy is simply wasted energy. Positive energy seeks to learn, to understand and to support what is. Autism is a neurological disorder. Parents cannot do anything or fail to do anything that would leave their child autistic. Suggesting otherwise is cruel and utterly wrong.
4. Support financially when possible
The education savings plan that you have begun may need to be used earlier than expected. Therapies, programs, resources and respite care are costly and yet they are the critical ingredients to making the lives of your children and their children with autism better. Listen to what your children are saying they need. Quietly reassure them that you will help in any way that you can.
5. Learn as much as possible about autism
There are many excellent resources on the market. The goal should be to increase understanding of the child’s communication, social and behavioral presentation NOT to find a cure. Information on how children with autism see the world and how they learn will do wonders for helping you to connect with your grandchild. One of my parent’s favourites is Thinking in Pictures by Temple Grandin.
6. Give the parents some time off
Offer to spend time with the children or provide the financial means to have the parents have time on their own. Don’t wait to be asked. Your child’s marriage and mental health need as much attention as does your grandchild. It is an investment for the whole family when you provide the regular opportunity for relief.
- Gift certificates for movies, dinner, spa, and fitness clubs are a way to “force” a parent to take time for him or her self. Most parents will never quite get around to taking care of themselves. A homemade meal or a house cleaning can go a long way to easing stress. Take care of your child so they can care for your grandchild.
7. Spend time with the siblings of the child with autism
Provide care for the child with autism so that parents and typical children can reconnect! So often, life at home is centered on the child with special needs that siblings can get “lost in the shuffle.” Special days away or planned activities give siblings the relief that they need from a busy household. Our other children need to know that it is healthy to take a break from caring for a person that needs a lot from us.
8. Teach your autistic grandchild to do things on their own
Give your grandchild the opportunity to develop self esteem by teaching them how to do things for themselves rather than doing it for them. It is so tempting to do things for our special needs children. We can easily feel that “our babies” must deal with so much already that it seems cruel to say, “You can do it!” But be aware that being overly nurturing can sabotage a child’s opportunity to learn to do something and feel the sense of accomplishment and pride when they get it! No grandparent would want to chip away at a child’s self esteem. When you guide your grandchildren through each small step and encourage their attempts (even if they are off the mark) you are building their internal sense of self and that is a gift of a lifetime. For some ideas on how to engage a child with autism in chores check out this blog here.
9. Respect the expectations and limits that parents set up
Raising a child with autism demands a structure and routine that is essential for the child’s peace of mind. Follow dietary restrictions, bedtimes, routines (no matter how odd they seem) and communication guidelines that the parents set. People with autism may have trouble coping with changes in routine, food, sleeping arrangements, toileting, etc when they are in your home. This is not because they are behaving poorly. This IS NOT a discipline (or lack thereof) issue. It is an autism issue and it needs to be treated as such.
10. Trust that you are important
You can make a deep and life changing impact on your grandchild by being the support that his/her parents need. As grandparents you may feel helpless and completely at a loss as to how to help. In reality, you do have the potential to make a huge difference whether you are physically near your children or not. Support, affirmation and love are what will get your child’s family through the challenge of raising a child with autism.
A great resource for grandparents that want to get involved is A Grandparent’s Guide to Autism Spectrum Disorders: Making the Most of Time at Nana’s House by Nancy Mucklow.
Editorial Policy: Autism Awareness Centre believes that education is the key to success in assisting individuals who have autism and related disorders. Autism Awareness Centre’s mission is to ensure our extensive autism resource selection features the newest titles available in North America. Note that the information contained on this web site should not be used as a substitute for medical care and advice.
My wife and l are Grandparents to 12 year old Granddaughter 4day awe
Both my wife and myself are Grandparents of 12 old granddaughter with autism we look after Lucy and her sister shopie 4 day a week we take the two girl to school it is no always easy but we do are best as loving grandparents
We just found out today my grandson age 3 is moderate to high autistic. I love and adore him no matter what. I know there isn’t anything that can change this for him. I just want to know what to expect and the tools to help not only him but my daughter her fiance and my granddaughter with the changes getting ready to come.
Please have a look at my most recent blog post which addresses this very topic – https://autismawarenesscentre.com/5-things-every-parent-should-know-when-raising-an-autistic-child/
Other good reads:
These articles will give you some focus points.
My grandchild is only 3 years old ,he Autism and i want to learn how to help please advice, how do i deal when he gets angry ? he is usually very calm but i need to learn how to deal with him out in public when he gets angry and screams. love my baby more than anything please help…
The big thing is going to be how you deal with the meltdown in the moment but also recognizing the signs that are happening before the meltdown occurs and starting to de-escalate your grandson. Some articles to read:
None of my sons grandparents care about my son with Autism. My own father tells me no when my son asked if he could visit him. My sons other grandparents invited him to travel with them, told me to make arrangements so he could due so with covid then uninvited him and told me he was a liar. Nobody accepts my son with autism. I do everything for this kid and with no regrets, take jobs I dont like that pay leas to work with his school and therapies schedule, do double paperwork for all doctors appointments since his father and I are divorced and he cant be bothered to do anything, teach him to do most things, pick up and prep all his medicines, fight with the school for what he needs and all people do is treat us like shit. If you are retired then you owe it to your grandkids to spend some time with them, disabled or not. Maybe their future would be brighter I’d grandparents would actually care enough to teach them some life or vocational skills instead of expecting the parents to do absolutely everything.
Jane, I am sorry to hear your grandparents story. We haven’t had it much better either with our two on the spectrum. It’s exhausting doing it all on your own. My mother-in-law said she was no longer going to send anything for her grandchildren’s birthday as they were now in their 20’s. They have no friends or workplace colleagues so what little they get makes them feel excited. Apparently, it’s too much effort to send them a card on their birthday. I’ve written about why it takes a village to raise an autistic child. https://autismawarenesscentre.com/why-it-takes-a-village-to-support-a-person-with-autism/ My attitude is if they don’t want to be involved, it is their loss as my children have changed my life for the better. I just go one day at a time and do what I can for my two. I also work full time so there is only so much I can do. This journey can feel very isolating at times.
We are suspecting our two year old grand daughter may have autism. She doesn’t talk, flaps when excited, has severe separation anxiety from mum and loves to play with toys that have buttons. She is friendly and smiles at people, not upset in large crowds and high fives or fist pumps anyone who asks. There are red flags though. Especially the lack of verbal skills.
My daughter and son in law don’t acknowledge anything is wrong except a language delay. They took her to speech therapy once but she cried so they don’t want to take her back. I have great relationship with them and my grand daughter and I try to just be encouraging and loving.
I do worry though because I know early intervention is best.
Appreciate any advice.
Glenda, even with a language delay there is lots you can do to help without a formal diagnosis. Have a look at this article – https://autismawarenesscentre.com/waiting-for-a-diagnosis/ This is also a great book – https://autismawarenesscentre.com/initiations-interactions-early-intervention-techniques-children-autism-spectrum-disorders/ and use visual supports to help with communication – https://autismawarenesscentre.com/visual-supports-best-way-use/
It can be very difficult for grandparents to get their children to see that their child has something amiss. It is very scary. Here are some ideas for offering support (even though I know there has not been a diagnosis) https://autismawarenesscentre.com/what-do-i-say-what-should-i-do-a-guide-for-family-and-friends/
Early intervention does help for a better outcome. You can do the work on your own for awhile until your daughter is ready to face this. If your granddaughter ends up going to preschool at the age of 3, someone at the preschool will more than likely flag these areas of concern and talk to the parents.
My grandson has autism. I took him to be evaluated in the doctor said, he’s autistic. The mother will not acknowledge this. Even though I have it in black and white.he was going through all these tests when the mother decided not to pay the insurance, everything was cancel.. he goes #2 in his pants. He is 6 years old and he is a very smart child. I babysit lately, because they cannot afford a babysitter. He swears and he hits me. I cannot keep going through this. His mother does not recognize any of this. She says her family was like him and they are all fine. No they are not. My son and her are you all the time about it. My son has no say in this, without them fighting
My little grandson was diagnosed with ASD a few weeks ago. I suspected this for quite some time, my other daughter, and some other relatives from the other side of the family. We never said a word, because we knew how my daughter and her husband felt – very defensive about it. Finally received a diagnosis of the little guy who will be 3 in a couple of weeks. I want to learn as much as I can, and sharing information with my daughter. She gets very upset and defensive. I am hurt and not sure what to do. Any suggestions? I just want the best for my grandson, and don’t want him to get ignored or left behind. I’ve also watched my son-in-law with my grandson and he gets very impatient and frustrated with him. They’ve got an IEP in place, however, isn’t ABA the best? or is an IEP ok at 3 years old?
When parents first receive a diagnosis, they tend to feel overwhelmed and saddened by the news. All of their hopes and dreams for that child now have to shift to a new reality. This takes time to do. The parents are the ones who will be worrying and making decisions for that child until the day they leave this earth. It’s also hard to know where to start, what information is the best, where to apply for services, what will be the best school etc. Your daughter may be defensive because she is in self-preservation mode.
Here is an article that I wrote last year on how to support a family who just received a diagnosis – https://autismawarenesscentre.com/what-do-i-say-what-should-i-do-a-guide-for-family-and-friends/
Here are some ideas for grandparents- https://autismawarenesscentre.com/12-ways-make-difference-autistic-grandchild/
There is also a book for grandparents – https://autismawarenesscentre.com/shop/autism/grandparent-s-guide-to-autism-spectrum-disorders-making-the-most-of-time-at-nana-s-house/
ABA stands for Applied Behavioral Analysis which is the process of systematically applying interventions – https://autismcanada.org/living-with-autism/treatments/non-medical/behavioural/aba/ . An IEP stands for Individualized Education Plan – https://www.autismspeaks.org/tool-kit/individualized-education-program-iep-summary-process-and-practical-tips . These are two different things. The IEP defines a student’s personalized educational goals and lays out the steps that will be taken to achieve those goals. It is a working document that guides those that are providing professional support to your grandson.
One size/treatment does not fit all. What will work best for your grandson depends on his autism neurology and how that works for him – how he processes sensory information and how he stores and retrieves information. There will be commonalities among all people with autism, but how they do those 3 things will be unique to each person. You have to understand how they handle new information and what those problems are around acquiring new information are.
Here is an article about programs – https://autismawarenesscentre.com/finding-a-program-that-works-for-your-child-with-asd/ and https://autismawarenesscentre.com/choose-best-treatmenttherapy-child/
While you may not know what to do right now, your role has to be a supportive one and not one of judgment. Your daughter will face lots of it from the outside world and she will need a soft place to fall. I have a very judgmental and critical mother who constantly made me feel I was coming up short with my two children with autism. They are now 22 and 20 and are doing very well in their lives as a result of our parenting and love. My mother has wound up very alone in her life due to alienating us. My husband’s mother has suffered the same fate.
Parents need unconditional love and support from their closest family members. Without it, we go on this difficult path alone. It’s better to have a trustworthy person at your side. You can be that person, but you will have to give your daughter time and space to grow into her new role.
Our Grandaughter is 7 and was diagnosed with Spectrum Disorder a year ago,my son and his wife leave us totally out of her life,they don’t attend holidays or birthday parties for her cousins,we offer help in anyway we can,her 4 year old sister is also kept from family functions, I need guidance please
Mary, family gatherings can often be too much for a child with autism so that is more than likely the reason they don’t attend such gatherings. You can’t take that personally. Even is a person with autism can hold it together during social events, there is often a fallout at home later. Because most people don’t know how to include an autistic person into a social function in a meaningful way, this can also be hard on the parents as well as the child. They may not be able to eat the same foods or participate in games.
Ask your son what would be a meaningful way to interact? Is it better than just one or two people come to his home at a certain time? Is there a location that the child with ASD likes and would be accepting of seeing people in that location?
We still struggle with family functions and our kids are 19 and 21. When they were young children, it was near impossible. My daughter would refuse to leave the house and my son would literally have a full shutdown at the event and fall into a deep sleep. We don’t have people over to our house as a rule and only attend a few select events throughout the year. Holidays and birthdays have never been great fun for our family and the pressure we got from my mother made it even harder. We often had to separate on holidays and one of us would stay home with our daughter on Christmas day. If we had been allowed to just stay together as a family without offending anyone, it would have worked much better for us.
my grandson has just been idetified as being autistic at the age of 15. It has taken years of chasing up assessments etc. now the work process to help Ben starts. He is bright and if he takes an interest in a subject he really gives it his all. He was getting no help at school for all we told them what we suspected. He was denied the chance to take graphic design training as his teacher daid she was of the opinion he wss not up to the training. We feel let down by the UK system.
Are you bringing the Grandparents Guide to ASD to the conference? We suspect that one of my grandchildren may be on the spectrum. The pros say global developmental delays, but some of the OCD things she exhibits, I don’t know. We use a lot of the same strategies for her that I use for the children with ASD that I work with. Any info can help. It’s different working with these children professionally than it is if they are in your family.
Brenda, I can certainly bring that book to the Calgary conference no problem. Most materials that we use in ASD are good for a whole range of diagnoses. Good practice and ideas are just that – good for many people!