Silhouettes of siblings with autism jumping from a sand cliff at the beach.

Autism x 2 : What Happens When Your Second Child Is Diagnosed

My son Marc was 2 years and 10 months old when he was first diagnosed with autism. I’d had clues: Marc wasn’t reaching certain developmental milestones like responding to his own name or waving bye bye. When I found out that Marc was on the spectrum I was devastated, but I was also relieved that my other child was a girl because I thought there was little to no chance of her having autism too. By the time Julia was 16 months old, I was rethinking that. Like Marc, Julia wasn’t exhibiting age-appropriate behaviour: there was no baby talk and she wasn’t responding to her name. One year after Marc was diagnosed, I was told that my second child was also on the spectrum. I will never forget the moment I received the diagnosis.  I went through so many emotions and felt life was being completely unfair to me. I was full of resentment over having a second child with autism.  The second diagnosis seemed impossible – how could this happen in one family?

What was hard in the early years was the level of difficulty each child had and how differently those difficulties presented themselves.

Our son, Marc, had no language until he was almost 5. He relied on stimming to help with anxiety and self soothe; engaging in video rewinding and obsessing over ceiling fans. His play centred around arranging toys. It took him hours to fall asleep at night and he woke up frequently throughout the night. Marc followed a strict gluten-free/casein free diet from age 15 months on. He had frequent meltdowns and was hypersensitive. A paper cut could result in a 3 hour crying fit.

Julia, two years Marc’s junior, had the same language difficulty and also didn’t speak until nearly age 5. She would fall asleep at night, but wake at 2 am as if it was morning and run around the house like a whirlwind. She had more imaginative play, concentrating on figurines and dolls. Julia was not a stimmer. She was more stubborn than Marc and socially anxious and withdrawn. Julia would hold on to my leg all day. It took one year of therapy to get her out of the house successfully to do outings. She followed the same diet as Marc but would not eat the same foods within the diet. She was hyposensitive, requiring a high degree of input and had a high pain tolerance.

Even with siblings, one size doesn’t fit all.

While there were similarities between both children like toilet training difficulties, sleep disturbances, restricted diet, difficulty transitioning, anxiousness and sensory integration disorder, their learning styles and how these challenges presented themselves required different approaches.  For example, Marc communicated using PECS; Julia used sign language. Both children had completely different therapists because their learning styles varied. Marc loved using a Time Timer; Julia felt anxious about it. Each child was motivated by something different. Marc was eager to please; Julia didn’t care what anyone thought.

When it came time to start school, Marc clearly needed a specialized setting with a high level of aide support; for Julia, an inclusive setting. The decision for these two educational settings was the right one and both flourished. Marc received more therapy for a longer period of time than Julia did. Marc had speech apraxia; Julia did not. They are both in high school and are now in the same specialized setting although Julia can handle more independence. Each follows a curriculum designed with their needs in mind.

While the original diagnosis sent me into despair, I have seen a beautiful friendship develop between Marc and Julia over time – something that many people with autism struggle to find.

They are best friends and rarely have a disagreement. They are interested in each other’s passions. They are willing to try what makes the other one happy. The most important thing for them is to be together, whatever the activity. Even though they have such different needs, I am impressed how they fold into each other’s daily routines. Julia takes on more of a caregiver role with Marc, and he is happy to be cared for by her. Marc can interpret every whine and facial expression Julia makes, and she does the same for him.

Having two children on the spectrum has taught me how unique each child is even with the same diagnosis. Boys and girls present differently. You have to be flexible in your therapeutic approach because what works for one child doesn’t for the other one. You have to develop different strategies for each child. You can learn from your mistakes on the first go-round and adjust for the second child. I read many books emphasizing different approaches to find information on what I could try for each child.

Expectations change with raising multiples – not only for the children, but for yourself. I am an expert at self-preservation because I know how hard it is to keep two children with autism happy and healthy. I need to be as fit and well-rested as I can be to tackle each day. Nothing has come easily, but I want to encourage new parents facing a second diagnosis that it’s not the end of the world. Just remember that each child has unique needs and what worked for one child may not work for the second or the third. It is easier for us to adapt to the children than the other way around, so develop flexible thinking. Learn what is motivating for each child, how they communicate, what their learning style is. As the saying goes, if you’ve met one child with autism, you’ve met one child with autism and this applies to children within the same family too.

At the start of my multiple autism diagnosis journey, I thought this was the worst thing that could happen, but now I wouldn’t want it any other way.

Marc and Julia will always be together and have each other. They take delight in each other’s company. They accommodate and respect each other’s difficulties and preferences. Julia is stronger physically and better with life skills, but Marc has better academic skills and is less socially anxious when in public. Alone they might have never developed the communication and support skills that they have learned with each other. Together they are stronger and make an excellent life-long support team.

Tags: , , .

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.

Read Our Full Editorial Policy

26 Comments Moderation Policy

  1. Ellen says:

    I have 2 girls, age 6 and 4, both diagnosed with autism. My eldest is doing great, she doesn’t need any special support. Butterfly for my youngest things are harder.
    I’m 37 now and i’m trying tot come together terms with not having a third child. I’m well aware that they risk of it having some form of autism too is big. I think because i would ben prepared for it, i would ben able tot cope but i can’t deal with the reactions from my family and friends. Everbody seems to have decided that i’m not allowed tot have more children in this situation. And how can i choose a third child when i already know it’s only wanted by me (and dad of course). That just seems top hard. But coming together terms with this is difficult too

    • I think what you need to think about is what may be involved with having a third child with autism. You never know what the needs may be and if there will be moderate or severe intellectual disability. You have to know that you have the time and resources to support another child with autism. I have two that are now young adults and there is a lot to support and do at this age – even more than when they were little. Adulthood lasts much longer than childhood. That being said, having a third child is a personal choice and one you would make with your husband. It is no one else’s business why you choose to have a third child. You have to do what is right for you as a family.

  2. Sara robles says:

    Hi am a mother of four kids but three of them have Autism is hard same time but am proud them thankyou 

  3. Ganlanmama says:

    Hi Maureen , I have a 4 year old son diagnosed with autism and I am writing a blog for Chinese families with autistic kids. Your experience will be very helpful and encouraging to the Chinese parents with similar situation. If you allow, can I translate your article and publish it on my blog for families with autistic kids? I will highlight author name and provide a link to your original blog here. Thank you very much!

  4. Dana says:

    Our. 27 month old daughter was diagnosed with a.s.d. by 22 months, we noticed signs at 7 months when she started to regress. She is non verbal with mmm and ahhh sounds as well as mam. Our youngest daughter is being evaluated next month as i have seen many signs indicating a.s.d., she is currently 16 months and was developing nicely until 13 months …
    Hard to tell between copying her sister but our doctor says concerns are warranted.
    Both my husband and myself have previous children without A.S.D.
    I was relieved with the first diagnosis. (I only felt guilty because i saw my child. Was different and i was glad the doctor confirmed my thoughts.
    To give you an idea, our specialist has expressed the same concerns that i brought up in last doctors visit.
    A second diagnosis is not going to change much of anything for us.
    We already have occupational therapists, specialists, nutritionists and speech therapists. We are blessed to have extremely clever children. They may need extra help in the future with certain things but we try and look at it in a positive manner, we are raising geniuses the trick is to figure out what works.

  5. Angela Zizak says:

    It’s so nice to know that others like yourself share my own experience. I was devastated when my daughter started showing signs of autism like her older brother. Now they are teens and are each other’s best friend. He is very empathetic to her needs when he normally ignores the world. They work on comics together-she draws and he writes the captions. I wouldn’t have it any other way. My friend whose daughter has very mild autism does NOT get along at all with her NT sister-my friend is jealous of my kids’ bond. There is always a “silver lining” in this journey, and I am blessed.

    • Thank you for sharing your positive story. The double diagnosis does not always mean it’s a bad thing. My two never fight and get along so well. It gives me hope for the future that they will never be lonely as they’ll always have each other.

  6. Angela says:

    Thanks for the post. I’ve carried so much guilt and shame that I’ve been trying to work through. I had my first two, boy with Down Syndrome and then a daughter and I felt so blessed that she was “normal”. Then when my son was two he lost his speech and signing and began the “stimming”. I remember holding him crying asking where my baby went and by 4 he was diagnosed with Autism. About a year later, my daughter was diagnosed with Autism. We thought we were being told that maybe it’s time to quit having babies and I fell into depression after my last miscarriage. Then we researched and decided to clean up our diet, cleaning chemicals, etc, and detox to try and beat this Autism thing. So came numer 3. We figured he was ADHD like daddy. Detoxed again and had number 4. After all we’ve done to change the outcome our third was diagnosed and I can’t elude myself that my baby girl is showing signs. I feel guilty because we want more babies but I don’t know if it’s “right” to continue. We love our kids, but it is a madhouse. I still have family who is doubtful about the diagnosis which hurts. And every time we have kids we get the cringed look from them. I’m sick of feeling ashamed and guilt for having our family and wanting more. What can I say?  They are still our blessings no matter what box they come in, and they are wonderful little souls.  I want to feel normal and just have freedom to do as others since it feels like with diets, meltdowns/tantrums, that we must live isolated or in a bubble. It’s a hard road but it’s taught us a lot and our marriage is strong. Good luck to you all and your struggles, stay strong!

    • There is more than likely a genetic component to autism and you or your husband may have that gene(s), so no matter what you do, your children will be autistic. What you have to decide is if you can handle all the demands that comes with having a large family with autism. We stopped at two because we knew we couldn’t handle more based on their needs. I also work full time as does my husband. You have to make the right decision for you and your family, but also think about the resources needed to support them. As your children age, services drop off and you have to put more time into finding things for them. I spend more time helping my children as adults than I did when they were in elementary school. I have to find everything they need myself and it takes an enormous amount of time.

  7. Jen Gour says:

    I have 3 kids.. 8y old boy with adhd and ASD, 2y old boy with ASD and 4y old girl (whom we are having evaluated to rule it out), some days I find the girl much harder to deal with.. Its all very frustrating, they are have different needs but all want it met NOW I’m not well myself. Some day are good, but rarely. I often hate my life and just want to go cry in bed and be left alone. I don’t have much support or help and the government doesn’t do much as for help.. Everything’s a battle. Not just with my kids (my oldest doesn’t like to be dressed or go out or have visitors which Iis hard in the other 2. But I also have to fight with the government and schools etc.

  8. Anna says:

    Thank you for sharing your story. I am in the midst of coming to terms with the fact that my son most likely has aspergers just like his older sister. They are 17 and 8. My feelings now are sadness and despair. How can I as a single mother, with almost no involvement from the fathers, cope and be supportive enough for the two of them? I have developed different ways of helping them, according to their needs. But I am afraid of drowning. I am sure that everything will work out, but the greif is overwhealming.

    • Grief is a part of the multiple diagnosis process and there is no way to avoid it. You will adjust in time and find the positives of this situation. I still have my “why me” days because there is rarely a day where both kids are on an even keel. I found figure skating at the age of 40 and take time out 3 days a week to do that one activity for myself. I have formed a great group of friends and it has saved me from total depression. Exercise is great for combating depression and that is well documented. Try and find something just for you. It can be a simple thing.

  9. Lisa says:

    My son was diagnosed on the moderate to severe end of the spectrum at two and a half. He is four now and is slowly making gains. My daughter was clapping, waving and saying a few words at 12 months. At 18 months, however, the talking and waving stopped and the toe walking, head shaking and hand flapping began. She was diagnosed on the severe end of the spectrum at the age of 2. My daughter’s diagnosis was far more devastating than my son’s. We were deceived into thinking she would be neurotypical. I feel anger , sadness and guilt on a daily basis. I fear that my children will never be independent, employed or have children of their own. I am also worried that the cost of therapy will bankrupt us. That being said, your story has given me some hope. Thank you.

    • Lisa, I felt the same way as you do now – even more devastated over my daughter. I just couldn’t believe this was happening to me twice! Her prognosis was worse than my son’s yet she has turned out to be the stronger one in abilities. So let me give you hope because my children are now 20 and 18. They are the best of friends and want to live together when they are ready to move out. They will always need support and care, but I am starting to see what that could look like and it will be quite good once I get everything in place. I have a 10 year plan to sort their living arrangements as I think it will take that long. Neither of my children spoke until they were almost 5. My son now reads 3 adult non-fiction books a week. Both have been volunteering successfully for several years which has now lead them to placements in good employment programs. My daughter just landed her dream job at a cat care facility. Both have been taking courses at university this fall.

      My children were mainly in special education classrooms within a mainstream school and did well. They are both very happy. My son is pursuing music courses, attends concerts at least twice a month, and is very popular wherever he goes.

      If you saw my life with them 16 years ago, you would have said there was no hope there. My son was not toilet trained until almost the age of 10. There were so many milestones to get over. With hard work and perseverance, both of my children have turned into amazing young adults. They are well behaved and really enjoying their lives. I am very proud of them.

      I thought my daughter was going to be neurotypical as well. Girls on the spectrum present differently than boys do. I still have my “why me” moments, but I do think I had two kids like this so that they would never be alone. They completely understand and support each other in a loving and caring way. They never even have an argument over anything. Our household is completely harmonious.

      Give yourself time to adjust to this. Therapy is not the answer to everything either. I read a lot of books and my husband and I did so much on our own in a natural way that allowed my kids to be kids and also to be themselves. There is a lot you can do yourself – read to your children, play music, take them to the library, find free community programs to try. The most successful program I ever put my daughter in was a free one at the public library. She went once a week to read aloud to a dog for 10 years – it changed her life!

      In a few years’ time, you will look upon this double diagnosis very differently than you do now. Yes – it is way harder than just having one on the spectrum, but in time you will see the good things about it as well. Stay positive and know you are on this path for a reason which will become clearer to you as time goes on.

  10. Bob says:

    My son just turned four and was diagnosed at 34 months (although we knew well beforehand). He’s doing great, but it’s been quite a struggle. Just last night we were braced by our main therapist that my younger son, 30 months, will be diagnosed as well. 

    I’m completely devastated and have feelings of anger and depression unlike anything I’ve felt in life before. I know I’ll get through it, but this really really hurts. I feel like I have no one to talk to about it. The therapy from our older son is putting such a strain on our marriage and life as it is, and now this. Our love for the boys is mixed despair and anger toward life–it’s such a horrible way to feel. 

    I know I’ll get better but today is very tough. 

    • I had the same feelings when my daughter was diagnosed a year after my son was. I had a nervous breakdown and lost my teaching job. I remained at home in a debilitating depression for 3 years. With therapy for myself, I gradually pulled myself out of that dark hole and started Autism Awareness Centre almost 15 years ago. That move changed my life for the better. I also took up figure skating at the age of 40 and am now competitive. Exercising, setting the skating goals and meeting a group of people not involved in autism lifted my spirits. I honestly think it has been the thing that saved me. You need to find that “thing” but it may take time.

      I really felt like “why me – what did I do to deserve this” when my kids were diagnosed. Now, I realize it has been a wonderful thing as my kids are best friends and they’ll always have each other. Autism can be lonely and isolating for those on the spectrum so to have a great sibling relationship has been a bonus. I am glad I have no NT children as they would have been completed neglected. Our whole house has run “the autism way” and it works. There are loads of us with more than one child on the spectrum.

      You will get through this dark period, but please know that your feelings are normal and just for a dual diagnosis. I didn’t know if my marriage would survive it either yet here we are 31 years later still together. Stay strong and know that these feelings will pass and change into something better, but you will have to work at it.

  11. Anna says:

    My daughter is very close to get diagnosed with autism. She is lovley child and I love her very much. My husband and I are thinking of having one more child, but we are affraid how it will be with one more kid regardless the possibility of having one more autistic kid. Your storry is inspirational. Thank you for sharing it

    • Don’t be worried about having a second child with autism. My two are the best of friends and are never lonely because they have each other. They really understand and respect each other. They give each other a lot of support. If I had neurotypical children, they would get none of my time. Our household is an autism one and it really works!

  12. Caiti says:

    I have 3 sons, 5, 4, and 2. Our oldest is non verbal asd and our 2nd child has recently been diagnosed with some sensory issues not sure if its asd yet but OlI can feel it coming. I thought i had made it through the worst going through the hoops of my oldest diagnosis…I thought this would be easier. I am having a hard time with this one more so than the 1st. I feel angry, im so very angry. I blame myself, I want to blame someone. Why do my kids have to struggle with this? Why? Im so mad. Thank you foe your post as I read it i cry trying to make sense of it all.

    • Caiti, I found the second diagnosis way harder to bear than the first. One diagnosis you can accept; 2 just seems downright unfair. I was very angry when it first happened, then sank into a 3 year depression. Feeling anger over this is a very natural reaction. If it helps you to know this, my children are now 18 and 20. They are the best of friends. Both speak now (they didn’t until almost the age of 5). My son has developed a wide range of interests and loves life. He “goes for it” every day and is well liked. My daughter is more anxious and socially reserved but she too has developed a wide range of interests. I now realize it was a blessing having two on the spectrum as they will always have each other. They are never lonely and support each other in all that they do.

      You will reach a point of acceptance, but that will take a few years. I still hear nasty comments like, “God must have wanted to teach you a lesson.” Honestly, I know where my kids are at all times, they never swear or talk back to me, they help with anything I need, and they are lovely people. If you’d met them when they were 3, you would have said there was no hope there at all.

      Hold your head up high, take one day at a time, and know that you will grow into this. You’re in a hard place now, but it does get easier with time. We travel with the kids and do all kinds of great activities. There was a time when we couldn’t even leave the house! I had my years of tears too and there is no way to avoid it. Your journey is a process with certain steps you will have to take. Stay strong and stay the course. You will find your way. And P.S. – discovering figure skating at age 40 changed my life. I compete and perform in shows, never having skated as a child. I found this wonderful outlet that saved me mentally. You need to find something too.

  13. Jan Plumb says:

    I came to this blog on a recommendation from a local support group. I immediately recognized your name as you were my music teacher for part of my high school years! This post was a great read for me, as we have one child on the spectrum and his triplet brother is waitlisted for an assessment as well. Thanks for your insight into raising more than one child with ASD.

    • Jan, what a small world! I left music teaching to devote myself full time to starting Autism Awareness Centre almost 14 years ago. My son will be 20 in February and my daughter will be 18 in March. I’ve been on a difficult journey, but it’s also been the best experience of my life. I’ve done things that I never would have done had autism not become a part of my life. Merry Christmas to you and your family!

  14. Dawn Kelly says:

    That was a really informative, well-written post. It gave me pause for thought. Thank you for that, Maureen.

    • Thank you for your kind words, Dawn. I wanted to let people know that while raising multiples with autism is challenging, there have been more good times than negative ones. My kids are the best of friends and love being in each other’s company.

Leave a Reply

Your email address will not be published. Required fields are marked *